Interventions and Supports for Adults with Fetal Alcohol Spectrum Disorder: An Integrative and Interpretive Review Joan Ragsdale B.Sc., University of Victoria, 1992 Thesis Submitted in Partial Fulfillment of the Requirements for the Degree of Master of Education in Curriculum and Instruction The University of Northern British Columbia May 2006 © Joan Ragsdale, 2006 1^1 Library and Archives Canada Bibliothèque et Archives Canada Published Heritage Branch Direction du Patrimoine de l'édition 395 W ellington Street Ottawa ON K 1A 0N 4 Canada 395, rue W ellington Ottawa ON K 1A 0N 4 Canada Your file Votre référence ISBN: 978-0-494-28354-7 Our file Notre référence ISBN: 978-0-494-28354-7 NOTICE: The author has granted a non­ exclusive license allowing Library and Archives Canada to reproduce, publish, archive, preserve, conserve, communicate to the public by telecommunication or on the Internet, loan, distribute and sell theses worldwide, for commercial or non­ commercial purposes, in microform, paper, electronic and/or any other formats. AVIS: L'auteur a accordé une licence non exclusive permettant à la Bibliothèque et Archives Canada de reproduire, publier, archiver, sauvegarder, conserver, transmettre au public par télécommunication ou par l'Internet, prêter, distribuer et vendre des thèses partout dans le monde, à des fins commerciales ou autres, sur support microforme, papier, électronique et/ou autres formats. The author retains copyright ownership and moral rights in this thesis. Neither the thesis nor substantial extracts from it may be printed or otherwise reproduced without the author's permission. L'auteur conserve la propriété du droit d'auteur et des droits moraux qui protège cette thèse. Ni la thèse ni des extraits substantiels de celle-ci ne doivent être imprimés ou autrement reproduits sans son autorisation. In compliance with the Canadian Privacy Act some supporting forms may have been removed from this thesis. Conformément à la loi canadienne sur la protection de la vie privée, quelques formulaires secondaires ont été enlevés de cette thèse. While these forms may be included in the document page count, their removal does not represent any loss of content from the thesis. Bien que ces formulaires aient inclus dans la pagination, il n'y aura aucun contenu manquant. Canada Abstract Alcohol use during pregnancy can have a significant impact with affected individuals experiencing complex patterns of physical, behavioural, and cognitive difficulties that influence their functioning during adulthood. Adults with a Fetal Alcohol Spectrum Disorder (PASO) form over one percent of our population yet remain vastly unrecognized, unsupported, and unstudied. Ongoing cognitive and adaptive functioning deficits in combination with increasing mental health issues cause adulthood to be one of the most challenging periods for individuals with FASD. Without adequate supports, many individuals are faced with extremely difficult life circumstances and find themselves without work, homeless, incarcerated, mentally ill, addicted, and struggling to parent. The salience of FASD as an adult issue poses a new challenge to policies, interventions, and supports. Research in this area is still in its infancy. This study reviewed, identified, and synthesized the extant body of adult FASD intervention literature and made broad recommendations regarding FASD intervention. This literature review involved an interpretive and integrative method utilizing Methodologically Inclusive Research Synthesis (MIRS). A multidisciplinary electronic literature search in combination with a consistent data extraction process was utilized to identify and extract information. The perspectives of both practice and research were assessed in order to address the integrated nature of this complex social and medical disability. Although limited empirical research was located, analysis of emergent themes from across the literature revealed a synergy or consensus of Information. These themes formed the basis for broad recommendations and the development of a potential integrated framework from which to view interventions and supports. Four studies evaluating interventions and supports for adults with FASD were located and analyzed. Modifications of environments, expectations, and treatment approaches appear key to supporting optimal functioning In adults with FASD. A functional approach combined with Increased professional and community education, outreach programming, and advocacy may result In Increased positive outcomes for adults with FASD. IV Acknowledgement This thesis is dedicated to my husband Jeff, and my family, from whom I have received amazing support and encouragement; to the staff at CNC Lakes District campus whose leadership and expertise was freely given; and to Dr. Bryan Hartman whose caring approach was both inspiring and motivating. I also wish to thank those individuals behind the literature whose perception and understanding have brought the issues facing adults with FASD to our attention. Without all of you I would not have finished this challenging journey. TABLE OF CONTENTS Abstract.............................................................................................................................................. ii Acknowledgement............................................................................................................. iv Table of Contents............................................................................................................... v List of Tables ...................................................................................................................vil List of Figures..................................................................................................................viii Introduction.........................................................................................................................1 The Problem....................................................................................................................... 4 Delimitations and Limitations............................................................................... 5 Terminology........................................................................................................... 6 11 Literature Review............................................ Teratogenic Effect of Alcohol..............................................................................11 Prevalence of FASD ............................................................................................12 Lifespan Outcomes of FASD...............................................................................15 Method..............................................................................................................................21 Research Review as a M ethod.......................................................................... 22 Phases of Research Synthesis.......................................................................... 24 Methodological Approach of This Study............................................................ 31 Identifying the Literature.....................................................................................33 Overview of Methodological Framework........................................................... 39 Results of Literature Search........................................................................................... 45 Analysis of Intervention Studies for Adults with FASD......................................47 Implications for Intervention Efficacy................................................................. 57 Discussion of Optimal Function Considerations............................................................ 58 Executive Functioning......................................................................................... 59 Mental Health................................. 68 Physical Health.................................................................................................... 82 Interpersonal Skills...............................................................................................91 Lived Experience.................................................................................................96 Adaptive Functioning........................................................................................ 112 Summary of Optimal Function Considerations................................................117 Discussion of Intervention and Support Themes......................................................... 121 Key Areas of Support........................................................................................ 121 Key Intervention Principles................................................................................122 Key Support Components................................................................................. 124 Administrative Considerations.......................................................................... 126 Proposed Integrated Intervention M odel......................................................... 127 VI Critical Summary...........................................................................................................130 Methodological Considerations....................................................................... 130 Study Strengths and Limitations...................................................................... 131 Areas for Further Study.................................................................................... 131 Conclusions and Recommendations.......................................................................... 133 Recommendations for Policy.......................................................................... 134 Recommendations for Practice....................................................................... 134 Recommendations for Research and Knowledge Development...................136 References.................................................................................................................... 138 Appendices................................................................................................................... 149 Appendix A: Search Criteria.............................................................................149 Appendix B: Databases and W ebsites........................................................... 150 Appendix C; Data Extraction Form..................................................................153 V II List of Tables Table 1 Canadian FASD Diagnostic Criteria............................................................... 9 Table 2 Literature Selection Criteria........................................................................... 34 Table 3 Intervention Outcomes for Adults with FASD............................................... 46 V III List of Figures Figure 1 Generation of an Interpretive Intervention Model for................................... 43 Adults with FASD Figure 2 A Proposed Intervention Framework for Adults with FASD...................... 128 Introduction My son will forever travel through a moonless night with only the roar of the wind for company. Don't talk to him of mountains, of tropical beaches. Don't ask him to swoon at sunrises or marvel at the filter of light through trees. He's never had time for such things, he does not believe in them. He may pass by them close enough to touch on either side, but his hands are stretched forward, grasping for balance instead of pleasure. He doesn't wonder where he came from, where he's going. He doesn't ask who he is, or why. Questions are a luxury, the province of those at a great distance from the periodic shock of rain. Gravity presses Adam so hard against the reality that he doesn't feel the points at which he touches it. A drowning man is not separated from the lust for air by a bridge of thought - he is one with it - and my son, conceived and grown in an ethanol bath, lives each day in the act of drowning. For him, there is no shore. Dorris, 1989, p. 264 Michael Dorris, the author of this quotation, was the first to write about prenatal alcohol exposure from a personal perspective. This quote describing his adopted son, an adult with Fetal Alcohol Syndrome (FAS), captures the struggles of prenatal alcohol exposure in artistic prose. It articulates the compelling need for the development of a "life vest” of support and intervention for himself, his adult son, and others affected by Fetal Alcohol Spectrum Disorder (FASD). Even though the body of knowledge pertaining to FASD and its implications for society has grown exponentially since the definition of FAS as a birth disorder in 1973, the need for further research into successful intervention and support for individuals with FASD is pressing. Results indicate FASD is the leading known cause of preventable mental and developmental disabilities (Stratton, Howe & Battaglia, 1996). They indicate the brain damage caused by prenatal exposure to alcohol is permanent, preventable, and has lifelong implications (Mattson, Schoenfeld & Riley, 2001). Studies indicate the prevalence rate of FASD is at least one percent of all births, with significantly higher prevalence rates found in some rural Canadian communities (Asante & Nelms-Matske, 1985; Robinson, Conry & Conry, 1987; Turpin & Schmidt, 1999; Williams, Odaibo & McGee, 1999). Furthermore, results indicate many adults with FASD remain unrecognized, undiagnosed, and unsupported (LaDue, 2002; Massey, 1997; Streissguth, 1997; Turpin & Schmidt, 1999). As illustrated in the opening quote, the results of current FASD adult outcomes are dramatic and distressing. Longitudinal and adult studies of FASD indicate that individual outcomes are often characterized by severe maladaptive behaviours (Dorris, 1989; Kleinfeld, Morse & Wescott, 2000; LaDue, 2002; Lemoine & Lemoine, 1992; Rutman, LaBerge & Wheway, 2002; Steinhausen & Spohr, 1998; Streissguth, Barr, Kogan & Bookstein, 1996). Quantitative and qualitative studies indicate that adults with FASD rarely are able to live independently and often have difficulties with adaptive behaviour, mental health, employment, addictions, socialization, crime, and poverty (LaDue, 2002; Massey, 1997; Streissguth et al., 1996). These results, combined with the voices of professionals, families, and communities have resulted in growing pressure for many social systems to develop programs and services to act as "life vests” that will improve the outcomes of affected individuals. Along with the call for change comes the call for further research. It is vital that more research in FASD intervention be carried out. An exploration of the literature reveals that the study of FASD has taken two general approaches. The first involves rigorous scientific animal and human studies on the many complexities and aspects of FASD - from the effects of alcohol on the brain to studies measuring adaptive and intellectual functioning (e.g., Kerns, Don, Mateer & Streissguth, 1997). The second path involves collecting the 'wisdom of practice' from individuals and professionals who have had many years of experience working with FASD (e.g., Kleinfeld et al., 2000); and from those living with FASD (e.g., Rutman et al., 2002). The result is two streams of rich literature. Although further studies on successful intervention strategies are clearly needed, there is also a concomitant need to clarify what is already known about FASD intervention. Very few reviews on the topic of prenatal alcohol exposure have been undertaken (see Griesbach & Polloway, 1990; Roberts & Nanson, 2000; Stratton et al., 1996, Warren & Foudin, 2001). There has been only one empirical study that has scientifically reviewed intervention strategies within the two streams of literature; however, its focus was on children and youth with FASD (see Premji, Serret, Benzies & Hayden, 2004). There have been no empirical studies that have reviewed the extant streams of literature in terms of interventions for adults with FASD. As indicated by Premji et al., a bridge within and between these two bodies of literature provides a more inclusive understanding of FASD intervention. It provides a means to compare and reconfigure existing results, an avenue for gaining greater and fresh insight into intervention possibilities, and guidance to further studies. It allows for the empirical synthesis of research results with the contributions of practitioners in the field. This study takes on the challenge of looking at how to support adult individuals with FASD. It will analyze the two growing streams of correlated literature that document the many struggles facing individuals with FASD, and will suggest solutions to these challenges. This review will also analyze a wide variety of results and sources in order to outline viable solutions to the complex and interrelated problems faced by individuals with FASD; thereby adding a key element to the existing research. The Problem As Indicated in the introduction, there is a pressing need for further research on intervention strategies for individuals with fetal alcohol exposure. Many adults with FASD are being asked to live lives without support, without identification, and, even when identified, without understanding (e.g., Massey, 1997; Rutman et al., 2002). Given current FASD lifespan outcomes, it can only be speculated what impact this disability has on education, employment, social, justice, and health systems; not to mention families and communities. Many researchers and professionals believe the impact on these socio-economic systems is significant and in some rural communities almost pervasive (Loock & Clarren, 2004). Although many practitioners and researchers have suggested an array of possible interventions for FASD, very few have reviewed the existing divergent streams of FASD intervention literature. This study will build on the existing research by looking at the body of FASD intervention literature as a contiguous whole. It will build on reviews done by others such as Griesbach and Polloway (1990), Premji et al. (2004), Roberts and Nanson (2000), Stratton et al. (1996), and Warren and Foudin (2001). This review will expand on these studies by involving an interpretive and integrative method, and by focusing on adult FASD interventions and support. The purpose of this study is to synthesize the current body of adult FASD intervention knowledge, for “although the field has grown dramatically ... much confusion still exists, and there remains a gap between scientific knowledge and general clinical information" (Streissguth, 1997, p. 7). It will include the perspective of both practice and research in order to address the integrated nature of this complex social and medical disability. This study will attempt to create a woven understanding, or lens, from which effective approaches to FASD intervention and further research can be viewed. It will strive to bridge the two streams of growing literature, thereby gaining fresh insight into successful interventions for adults with FASD. Furthermore, this study will act to bring greater attention to a much overlooked and often ignored issue, adults with FASD. Delimitations and Limitations Although the amount of research on FASD has burgeoned in the past three decades, it is still considered a relatively new area of research. This emergent reality must be considered a limitation of this study. However, it can also be argued that the very nature of this evolving research base makes research synthesis timely. Taking a broad, ecological look at this issue not only strengthens future primary research, it may even provide validity for existing results and provide a means to accelerate professional understanding of adult FASD intervention. Another limitation will be the quality of literature assessed in this inquiry. As a broad view of FASD intervention is desired, both qualitative and quantitative literature published since 1973 will be considered. Given the grassroots approach to intervention and support for adults with FASD (e.g., Dorris, 1989) it is important the voices of practice be blended with those of research as valid sources of information. This breadth of consideration will allow for a multiple lens perspective, which may result in fresh insight into this complex social and medical disorder. The final consideration concerns the reality that many aspects of FASD intervention have not been empirically tested. Given the difficulties surrounding adult diagnosis, access to random population samples is challenging. Furthermore, the interrelated social and medical complexities associated with FASD make it difficult for intervention studies to control for various confounding factors such as marginalization, family functioning, and exposure to violence. Despite these recognized challenges to primary research, it is still evident that further research in the area of intervention is needed. Terminology As with many other areas of emergent study, there exists a lack of common terminology surrounding prenatal alcohol exposure. The following description of FASD is a needed foundation for the study of prenatal alcohol exposure in adults. This section will lead with a brief description of the action of alcohol on the developing fetal brain and will then move into an overview of the resulting diagnoses and terminology. Action o f alcohol on the brain. Rigorous animal and human studies have established that alcohol, as a teratogen, is capable of directly Inducing permanent developmental abnormalities in a fetus (Mattson et al., 2001; Stratton et al., 1996). This includes permanent damage to brain structure and functioning. Results show that if a woman drinks when she is pregnant, the alcohol she consumes passes through the placenta and into the fetus. The blood alcohol level in mother and fetus are approximately equal within minutes after consumption and the alcohol appears to stay in the fetus longer (Streissguth, 1997). The specific mechanism through which alcohol exerts its teratogenic effect is not known, and not all fetuses prenatally exposed to alcohol show teratogenic effects or develop FAS (Stratton et al., 1996). However, where quantifiable impacts have been found research suggests that many factors influence outcomes (Goodlett & Horn, 2001). These factors include timing, dosage, and conditions of the alcohol exposure, as well as maternal and fetal health. As a result, the effect of fetal alcohol exposure on the offspring is individual. The physical and cognitive deficits resulting from prenatal alcohol exposure are presented as a spectrum or range throughout the population (Streissguth & O'Malley, 2000). Where some individuals display no effects, others manifest mild to severe disturbances of physical, behavioural, emotional, and social functioning and can be devastatingly disabled in their ability to cope with even simple day-to-day interactions (Goodlett & Horn, 2001, Streissguth & Kanter, 1997). Terminology and diagnoses. There are many terms that have been defined in order to encompass the above-noted spectrum or range of physiological deficits resulting from prenatal alcohol exposure since Lemoine, Harousseau, Borteyru and Menuet (1968) first published deleterious outcomes for infants prenatally exposed to alcohol. Fetal alcohol spectrum disorder (FASD) is a non-diagnostic, umbrella term defined by Streissguth and O’Malley (2000) that covers the entire range of disorders and related birth defects resulting from prenatal alcohol exposure. It is a particularly useful term, as it is representative of the spectrum of effects yet reflects the common characteristics of central nervous system (CNS) dysfunction. In addition, this term adds to the recognition that it is the cognitive and behavioural problems resulting from prenatal alcohol damage that present the primary challenges to intervention and support (Streissguth, 1997). Therefore, FASD is the term that will be used for the purpose of this study. Under the umbrella term, FASD, are several diagnostic terms which will appear throughout the quotes and cited literature in this study and are, therefore, important to understand. They include fetal alcohol syndrome (FAS), fetal alcohol effects (FAE), partial fetal alcohol syndrome (p-FAS), alcohol-related birth defects (ARBD), fetal alcohol related conditions (FARC), and alcohol-related neurodevelopmental disorder (ARND). FAS is a medical diagnosis, first defined in 1973, for a set of physical and cognitive symptoms resulting from prenatal exposure to alcohol during pregnancy (Jones & Smith, 1973). A syndrome is a constellation of features related to a common etiology; in this case prenatal alcohol exposure. The criteria for FAS are specific and it is the most visually apparent or observable constellation of prenatal alcohol exposure. All of the following items are required for the diagnosis of FAS: confirmation of prenatal exposure to alcohol, delayed prenatal and/or postnatal growth, CNS impairment, and a characteristic pattern of facial feature anomalies. These include short palpebral fissures (eye slits), elongated mid-face, short upturned nose, smooth or long philtrum (the ridges 8 running between the nose and the lips), thin upper lip, and flattened facial bone structure (Stratton et al., 1996; Streissguth & Kanter, 1997). The diagnoses, fetal alcohol effects (FAE), partial fetal alcohol syndrome (pFAS), fetal alcohol related conditions (FARC), and alcohol-related neurodevelopmental disorders (ARND), were developed to encompass prenatal alcohol exposure that is not FAS. These diagnoses resulted from research which found the existence and severity of alcohol-related brain damage often occurred in the absence of either facial abnormalities or the marked growth deficiencies necessary for FAS diagnosis (see Mattson & Riley, 1997; Streissguth & O'Malley, 2000). However, there have been variations in the applications of these diagnoses (Stratton et al., 1996; Streissguth & O’Malley, 2000). To facilitate diagnostic consistency in Canada, defined terminology and diagnostic criteria, as shown in Table 1, have recently been determined (Chudley et al., 2005). It follows that individuals without full FAS are more difficult to identify since they may have few or no physical features that reflect cognitive damage and impairment (Streissguth & O’Malley, 2000). As a result, FASD and its various sequelae are often referred to as a "hidden disability." It is now widely accepted that prenatal alcohol exposure without facial dysmorphology may be the most common and problematic subtype (Streissguth & O'Malley, 2000). As stated by the Institute of Medicine these individuals display a: complex pattern of behaviour or cognitive abnormalities that are inconsistent with developmental level and cannot be explained by familial background or environment alone such as: learning difficulties, deficits in school performance, poor impulse control, problems in social perception, deficits in higher level receptive and expressive language, poor capacity for abstraction or metacognition, specific deficits in mathematical skills, problems in memory, attention or judgement. (Stratton et al., 1996, p. 5) This passage clearly defines individuals in need of intervention and support. Table 1 Canadian FASD Diagnostic Criteria Descriptor FAS Term Criterion fetal alcohol syndrome CNS impairment* Growth impairment** All 3 facial anomalies present*** Prenatal alcohol exposure confirmed or unconfirmed p-FAS partial fetal alcohol syndrome CNS impairment* No growth impairment 2 of 3 facial anomalies present *** Prenatal alcohol exposure confirmed ARND alcohol-related CNS impairment* neurodevelopmental disorder No growth impairment No facial anomalies present Prenatal alcohol exposure confirmed Note. CNS = central nervous system. *CNS impairment defined as having abnormalities in at least 3 domains at 2 standard deviations below the mean. Domains include: hard and so ft neurological signs; brain structure; cognition; communication; academic achievement; memory; executive functioning and abstract reasoning; attention deficit/hyperactivity; adaptive behaviour, social skills, social communication. * * Prenatal, postnatal or both. * * * F acia l anomalies include; (1) short palpebral fissures, (2) smooth o r flattened philtrum , (3) thin upper lip. From "Identifying fe ta l alcohol spectrum disorder in prim ary care ” by Loock, Conry, Cook, Chudley, & Rosales, 2005, Canadian M edical Association Journal, 172(5), p 628. Brain damage resulting from prenatal exposure to alcohol remains constant within all the above-noted terminology and diagnoses. The term FASD encompasses this reality and asserts that while there are physical and cognitive differences in the various diagnoses, brain damage is brain damage. Primary and secondary disabilities. Finally, there are two other terms that need to be defined for this study and they are the primary and secondary disabilities associated 10 with FASD. Using Streissguth’s definition (1997), primary disabilities are those that directly reflect the CNS damage and dysfunction resulting from prenatal alcohol exposure. Secondary disabilities are those an individual “is not born with, and that could presumably be ameliorated through better understanding and appropriate interventions” (Streissguth et al., p. 4). That is, those disabilities resulting from the difficulties faced living with hidden, often misunderstood, and often undiagnosed brain damage. The Institute of Medicine summarized that "although cognitive problems are unavoidable, depression, anxiety, anger, antisocial behaviour, and isolation do not need to result from this disorder" (Stratton et al., 1996, p. 80). It is important to note that these definitions have not been thoroughly tested. Further research into the primary and secondary causes of outcomes in adult individuals with FASD is still in its infancy stage. Many complex factors such as exposure to contextualized experiences and the actual action of alcohol on brain structure, and function, are still being studied. Outcomes of such studies may impact the delineation of secondary disabilities as proposed by Streissguth. 11 Literature Review The following literature review lays the foundation and context for this study. It includes a summary on the teratogenic affects of alcohol, the prevalence of FASD, and outcomes for adults with FASD. By reviewing these three areas, a framework for this study clearly emerges. Teratogenic Effect of Alcohol Perhaps one of the first questions asked when studying FASD is what effect does alcohol have on the developing fetus? Although a complete review of the action of alcohol on the fetus, or epidemiology, is beyond this study, it is important to understand the greatest impact of alcohol is to the brain (Mattson et al., 2001). Rigorous animal research has documented the overwhelming effects of alcohol on the developing fetus, including its toxicity to the developing CNS (e.g., Goodlett & Horn, 2001). Alcohol is a neurobehavioural teratogen. It passes through the placenta and has been found to destroy cells, change the normal migration and differentiation of cells, reduce the number of neurological pathways or connections between cells, alter neurochemistry, and reduce the myelination of axons in the developing fetus (Goodlett & Horn, 2001; Stratton et al., 1996). In addition, it can interfere with the establishment of mature cell structure and function (Goodlett & Horn, 2001). This results in a variety of individual brain growth abnormalities which affect basic cognitive abilities and sensory responses. Furthermore, studies indicate vulnerability to alcohol-induced damage varies across cell types and tissues with greater susceptibility found in brain structures responsible for executive functioning, such as the basal ganglia, corpus callosum, cortex, cerebellum, and hippocampus (Mattson et al., 2001). Executive functioning refers to a group of “higher-level cognitive abilities such as solving problems, thinking abstractly, planning ahead, and being flexible in one’s thought process” (p. 187). These 12 skills are independent of overall intellectual ability yet directly influence an individual’s ability to complete a task and generalize information. As Streissguth (1997) eloquently summarizes: The effects of FAS are difficult to fathom - subtle disruptions in the proliferation and migration of the brain cells that provide the architecture for later problem solving, and subtle deviations in the neurochemical balance that permits the transport of messages from one part of the brain to another. When these processes are disrupted it is difficult to store, retrieve and transform past experiences into knowledge in order to modify future behaviours - a source of great frustration for those with FAS and a cause of dysfunctional and maladaptive behaviours, (p. 10) Furthermore, of all the substances of abuse “including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioural effects in the fetus” (Stratton et al., 1996, p. 35). The neurotoxic effect of alcohol has been irrefutably established. While prenatal exposure to alcohol has been found to be harmful, the effects vary widely. Although many reports of adverse effects refer to heavy and binge drinking, recent research has also documented deleterious outcomes for individuals exposed to small amounts of alcohol (Sokol, Delaney-Black & Nordstrom, 2003). These factors, along with varying susceptibility, indicate that abstinence during pregnancy is strongly recommended for both preconceptual and pregnant women. Evidence indicates prenatal exposure to alcohol can result in a range of harmful effects on the fetal brain and body. Prevalence o f FASD The next logical inquiry is what is the rate or prevalence of fetal alcohol disorders? Prenatal exposure to alcohol is the leading known cause of preventable birth defects, cognitive impairment, and developmental disabilities (Sokol et al., 2003). Studies estimate that 10 in every 1000 (or 1%) children are born with prenatal alcohol exposure defects, a rate at least double that of either Down syndrome or spina bifida, two of the most commonly recognized birth defects (May & Gossage, 2001; Streissguth, 1997). 13 Population studies indicate the prevalence of FAS to be between 0.5 - 2.0 per 1000 live births with incidences of the entire spectrum of fetal alcohol exposure diagnoses to be at least 1% (May & Gossage, 2001). As there are over 30 million people in Canada and over 3.9 million in British Columbia (Statistics Canada, 2001), a prevalence rate of 1% implies there are more than 300,000 individuals impacted with FASD in Canada and over 39,000 in British Columbia. These incidence rates are offered to emphasize the magnitude of a problem that has serious implications for individuals and for society. The above-noted results are compounded by those studies which convincingly indicate prevalence statistics of 1 in 100 may be very conservative, especially for parts of rural Canada and other parts of the world such as northern Australia (Asante & Nelms-Matske, 1985; Hancock, 2004; Robinson et al., 1987; Williams et al., 1999). Rates of FAS have been found to be as high as 12% in some rural Canadian communities (Robinson et al., 1987). Considering other fetal alcohol diagnoses, such as p-FAS and ARND have been estimated by the Institute of Medicine to be between 3 to 5 times the incidence of FAS, this implies a possible prevalence of between 36% and 60% (Stratton et al., 1996). When the lifespan outcomes of FASD are considered with these profound prevalence rates, the need for further study, especially in terms of intervention, can not be understated. Prevalence of FASD may be further underestimated due to complications in attaining diagnosis. There are several factors that complicate diagnosis; the first is limited access. Despite the three decades of clinical research it remains difficult to find physicians trained in fetal alcohol diagnosis (Sokol et al., 2003; Streissguth, 1997; Turpin & Schmidt, 1999). For example, Clark, Lutke, Minnes & Ouellette-Kuntz (2004) found there were only two provinces in Canada that offered adult diagnosis. One was British Columbia, and within British Columbia there were only two teams that offered this service. Both of these teams had long wait lists and existed in a large urban centre not 14 easily accessible to the many affected adults living in rural communities. In addition, the cost for diagnosis lay with the individual, which presents another significant barrier as research suggests many of the adults affected with FASD live in poverty and have no direct contact with needed support services. Secondly, studies show that physicians and other professionals often lack sufficient knowledge of FASD even to suspect its presence, let alone refer and/or diagnose (Little, Snell, Rosenfeld, Gilstrap & Grant, 1990; Sokol et al., 2003; Stratton et al., 1996; Streissguth, 1997; Williams et al., 1999). Diagnosis can not be made through a definitive test procedure; it is dependent on clinical expertise and complicated by the finding that not all exposed offspring are affected (Goodlett & Horn, 2001 ). Therefore, the current limitations and barriers to clinical expertise suggest that many affected individuals do not have access to and do not receive correct diagnosis. If available, diagnosis is still faced with two more challenges. The first is the clinical difficulties surrounding adult diagnosis. Studies indicate diagnosis is most accurately done between the ages of 2 and 11 years (Clark et al., 2004; Stratton et al., 1996). Second, even if FASD is suspected, there are often difficulties completing the needed maternal and prenatal case history. Many affected individuals no longer have contact with their biological mother or family, and there exists a lack of documentation and routine screening regarding maternal alcohol use (Sokol et al., 2003; Stratton et al., 1996; Streissguth, 1997; Turpin & Schmidt, 1999). The difficulty in obtaining an adequate history of client/patient alcohol intake is a widely-recognized problem in medical evaluation which only compounds the barriers facing accurate diagnosis (Stratton et al., 1996). These diagnostic complexities indicate that there exists a large underserved population prenatally affected by alcohol who remain undiagnosed and often unrecognized (Streissguth & Kanter, 1997; Rutman et al., 2002). As Massey (1997) 15 States, “if it is impossible to accurately estimate the number of infants and children born with FAS or FAE, then the task of determining the number of adults already affected is insurmountable ... there could be tens of thousands of FAS and FAE adults living in Canada today” (p. 35). Lifespan Outcomes o f FASD As illustrated in the opening quote, there are many challenges facing adults with prenatal alcohol exposure. FASD does not cease to exist upon maturation of the individual nor do the symptoms become less severe. Results indicate that the brain damage resulting from prenatal alcohol exposure lasts a lifetime. The interactions of this brain damage with the complex psychosocial circumstances of life manifest themselves in a spectrum of physical, cognitive, and behavioural effects (Streissguth & O’Malley, 2000 ). There are relatively few empirical studies or systematic research reports on adults with FASD (Clark et al., 2004; Stratton et al., 1996; Rutman et al., 2002). The lack of data is most likely due to the relatively recent clinical awareness of FASD and the resulting focus on prevention and early intervention. In addition, it may be partly due to the difficulties of tracing affected individuals for follow-up and the lack of adequate adult diagnosis. Available longitudinal studies done in the United States, France, Germany, and Sweden, reveal distressing outcomes for adults with FASD (Aronson, 1997; Lemoine & Lemoine 1992; Loser, Bierstedt & Blum, 1999; Steinhausen & Spohr, 1998; Streissguth et al., 1996). These studies seem to indicate that effects of prenatal alcohol exposure become more significant later in development, perhaps because fetal exposure to alcohol affects behaviours associated with mature adaptive and social functioning (Stratton et al., 1996). 16 An extensive literature search revealed that University of Washington researchers, headed by Dr. Anne Streissguth, have published the most extensive longitudinal study on adults with FASD (Streissguth et al., 1996). Their 1996 research aimed to establish an information base “fundamental to the amelioration of secondary disabilities in people with FAS and FAE” (p. 10) and studied the lives of 415 affected individuals. Results of the 1996 longitudinal study found the IQ of the participants ranged from 29 to 122 with a mean of 79 for those with FAS, and 90 for those with FAE (Streissguth et al.). They found IQ remained relatively stable over time. Most disquieting however, was the finding that adaptive functioning skills were significantly lower than expected based on IQ; with the greatest impairments found in social abilities (Streissguth et al.). These results concurred with an earlier study on adults and adolescents (Streissguth et al., 1991). In addition to poor adaptive functioning levels, the 1996 study described severe maladaptive behaviours (Streissguth et al.). The study reported that many adults with FASD suffered from mental health and addiction problems, disrupted school experience, and trouble with the law. Furthermore, of the participants who were 21 years and older, a significant portion were unable to live independently and the majority experienced persistent employment problems. Although clearly an important study, this study emphasized descriptive statistics and did not provide a contextual picture of effects. The study also did not involve any control groups, which makes it difficult to assess the relative contribution of prenatal alcohol exposure from other possible postnatal social factors, such as lack of support services, poverty, and family dysfunction. Furthermore, this study relied heavily on caretakers/informants and virtually excluded input from individuals directly affected by FASD. 17 Other longitudinal studies have, however, reported results similar to those of Streissguth and her colleagues. Lemoine and Lemoine (1992) found that mental health problems constituted the most severe manifestations in adulthood: even in those individuals who lacked the characteristic dysmorphic features of FAS. Their clinical observations indicated individuals with FAS could not focus on their work environment because of their immaturity, considerable instability, and refusal to cooperate. Work site observations revealed that restlessness and hyperactivity concealed a lack of assurance and initiative, as well as the need for assistance and protection. Steinhausen and Spohr (1998) described similar results. Their studies indicate that adolescents and adults affected with FASD suffered from an excess of psychopathology including hyperkinetic disorders, conduct disorders, and emotional disorders. Their results suggest speech disorders, emotional disorders, and abnormal habits increased over time. In addition, they found cognitive functioning to be stable over time whereas attention and social problems compounded and became worse in later life. Aronson (1997) found a wide spectrum of impacts on the physical and psychological development of affected individuals. Results indicated difficulties with attention deficits, motor problems, learning disorders, and higher rates of disturbance. In addition, this study showed that developmental retardation, perceptual difficulties, attention deficits, and growth retardation were not significantly reduced in individuals placed in good foster homes early in life. These results suggest that the above difficulties were of prenatal origin and not a result of postnatal environment (Aronson, 1997). However, concurrent results also indicated individuals who remained in family environments with continued alcohol problems appeared to be doubly handicapped. Loser, Bierstedt and Blum (1999) found that only 6 of their 52 participants were able to live independently with regard to income, occupation, and lifestyle. However, even though none had graduated from high school, this study found that many were able 18 to work in simple occupations and had received modified educations. All participants lived in sheltered environments and rates of trouble with the law were lower than other longitudinal studies. These results suggest direct benefits from the provision of adequate living supports. More recently, Clark et al. (2004) published the first descriptive study on Canadian adults with FASD. Their results were again similar to those above. They found that adaptive functioning had a greater association to secondary disabilities than cognitive impairment. The results indicated many individuals had a mental health diagnosis and a disrupted school history. Adults with FASD were described as being vulnerable to manipulation and many had experienced some form of physical, sexual, and/or verbal abuse. Furthermore, they found that even though the individuals studied were of average intelligence they still required high levels of support. Their results suggest that “IQ alone is not [sic] sufficient criterion for determining the need for support services among persons with FASD as they may have greater difficulty performing dayto-day activities while still possessing a measured IQ of 70 or greater” (p. 10). LaDue has also been instrumental in reporting and documenting the ongoing needs of adolescents and adults with FAS. In adolescents, she reported academic weakness and increasing social difficulties with isolation as a result (LaDue, 2002). Low motivation, inability to understand or respond to needs of others, and maladaptive behaviours were noted. Furthermore, involvement in criminal activity, homelessness, and low self-esteem were also seen as problematic. Mental health issues such as depression, suicidal talk, suicide attempts, substance abuse, sexual/emotional abuse, and trauma were found to be common as well. LaDue (2002) noted that adults with prenatal alcohol exposure often experienced social, sexual, and financial exploitation from others, and exhibited a need for supported medical, legal, and parenting assistance. 19 Other Canadian qualitative studies such as Massey (1997), and Rutman et al. (2002) place the descriptive characteristics of FASD in a contextual reality. Their results suggest the challenges facing adults with FASD are ecological and encompass all aspects of the individual’s life. Massey’s (1997) study provided a narrative of the day-to-day lives of five women with FASD. Many issues such as powerlessness and the feeling that their lives were in the control of others were identified. All had experienced difficulties with education and were unable to understand their emotional struggles. They remembered the people who had punished them for “being who they were’’ (Massey, p. 121). They spoke of shame and of seeing themselves as the problem. Most lived in poverty, were unemployed, and abused substances and alcohol. They neglected their health, and, with the exception of one, all had been repeatedly pregnant. They described suffering from suicidal thoughts, suicide attempts, anxiety, and emotional difficulties. Physical and sexual abuse was common for all, and isolation characterized their lives. Massey summarized her study (1997) by stating, “We need to listen to the voiceless among us ... they did not ask to live this existence, coping with a life more complicated than they can manage unaided. We should not let them live this life alone” (p. 216). Rutman et al. (2002) found in their study of lived experiences of adults with FASD that lives of affected individuals often changed quickly and dramatically. Affected individuals described the impact of FASD diagnosis to be a positive one. They discussed the difficulties of diagnosis and described how it helped them understand themselves, their lives, and their difficulties, in some cases for the first time. The majority of participants also described how they were struggling to parent their children, some of whom were also affected by FASD. Many of the adults interviewed lived interdependently and were keen to find and keep a job. In addition, many had difficulties with full time work, relationships, and the legal/justice system. Trouble with education 20 and mental health was described, as well as the need for supports, including supportive housing. Perhaps most importantly, this study illustrated the pervasive impact of FASD on the educational, health care, employment, and criminal justice systems. In addition, it established that in some circumstances FASD is a multigenerational disorder. This is an essential consideration for the development of intervention and prevention strategies. Although limited in their generalizability, these studies provided a picture and a rich description of the lives of some adults affected by FASD. They imply there may be limitations to developing successful supports when FASD is looked at only in pieces. They establish that it is important for the descriptive statistics to be considered together with those studies that provide context to this pervasive disorder. Throughout all of the cited studies, calls for further research on lifespan outcomes, FASD intervention and prevention were prevalent. They establish that further study on the many issues surrounding prenatal alcohol exposure and its impact on adulthood is needed. However, there currently exists a limit to the ability to develop adequate support and policy without a bridged understanding of the disorder, the resulting outcomes, and the lived experience of those affected. The challenge, as well as the complexity, lies in determining what can be done now and in the future to support affected individuals of all ages. This study attempts to build on the existing literature and knowledge surrounding FASD by taking a broad look at intervention. It attempts to integrate the knowledge of research with practice, and strives to create an ecological lens from which successful interventions may be viewed. It adds to the literature by providing an integrated foundation for intervention research and perhaps alternative insights. 21 Method This study focused on adults with FASD, individuals who are often in need of a “life vest” of support to validate and navigate their lives. These individuals are faced with a disability that is often invisible yet permeates every aspect of life; a disability that is inextricably linked to the social complexities of substance abuse. It follows that the method of inquiry must address the contextual breadth of this issue. The search for a method revealed a study done by Bryan (2000) who was looking at teen counselling issues. This study used an interpretive and integrative review method that struck a harmonious cord with the goals of this study. The similarity being that he too was looking for a method of review that involved a broad ecological perspective that allowed for the integration of contributions made by research, practice, and personal perspective. The method he outlined provided for rigorous review and allowed for interpretive insight into what is a complex social condition. He outlined what Suri (2002) has since termed methodologically inclusive research synthesis (MIRS). A blend of interpretive and integrative review methods provides a process from which the inference of broad generalizations regarding FASD intervention can be made. It provides a mechanism for drawing conclusions about the efficacy of intervention and for identifying areas for further research. In addition, it provides for a forum that may result in bringing greater attention to the often ignored challenges facing adults with FASD. This study blends the integrative approach outlined by Cooper (1982, 1998) with the interpretive approach outlined by Eisenhart (1998) by using the MIRS framework set out by Suri (2002). As Bryan indicates, these approaches assure a rigorous review method for assaying the cumulative knowledge of a field (2000). The following sections summarize the methodology and place this study within the multimethod approach outlined. 22 Research Review as a Method There is little doubt concerning the usefulness of reviews as evidenced by their high citation rates compared with typical papers of primary literature (Cooper & Hedges, 1994). Literature reviews form an integral role in scientific inquiry. Cooper (1998) summarizes that: Every scientific study begins with the researcher examining reports of previous studies related to the topic of interest. Without this step, researchers cannot expect to construct an integrated, comprehensive picture of the world. They cannot achieve the process that comes from building on the effects of others. Also, investigators working in isolation are doomed to repeat the mistakes made by their predecessors, (p. xi) Literature reviews act as the ground wires of research as they bring coherence and perception to a problem area. They act as basic elements of knowledge accumulation and generation. They tie theories together and ensure bodies of empirical studies are linked to the knowledge of the field. They demand perspective, illuminate gaps, and provide insight and direction. Reviews add to the body of knowledge and allow researchers to step back “from seeing their field as singular [to] seeing its multifaceted strands” (Meacham, 1998, p. 405). Despite their pivotal role in research many reviews are criticized for being subjective, narrative, and non-transparent in their methods (Ellis, 1991). Over the last three decades the nature of literature reviews has changed. They have played an increasingly integral role in addressing the knowledge explosion and time constraints facing researchers. Cooper and Hedges (1994) summarize that the knowledge explosion combined with increased efficiency in material location have made it impossible for most researchers to keep up with primary research in their field. As a result, the role research reviews play in the accumulation of knowledge is large, and growing larger. There is greater reliance on research synthesis to remain abreast of developments in related fields of interest. With this growth, the need for greater 23 transparency and accountability in the process of review has emerged concomitant with the need for explicit rather than implicit review methods (Ellis, 1991 ; Suri, 2002). Several methods have been developed to improve rigour in research synthesis. As a result, literature reviews have gained acceptance as legitimate research methods. As outlined by Suri (2002), the common premise underlying different forms of research synthesis is that evidence may be analyzed and synthesized “ ... at three levels, each of which makes a worthy contribution” (p. 2). The methodological techniques at each of these three levels may be quantitative, qualitative, or both. These three levels are often referred to as primary research, secondary research, and research synthesis. Using Suri’s definitions, primary research is the collection of raw data to pursue one’s own research question. Secondary research involves the re-analysis or re­ interpretation of raw evidence or data collected by other primary researchers. Research synthesis is different from primary and secondary research in that it analyzes or interprets the analyses or interpretations reported by primary researchers rather than collecting, analyzing or interpreting any raw data or evidence. Clearly these three levels of knowledge construction are interrelated and complementary, each allowing for the contribution of knowledge to a given field. Suri (2002) reasons: Primary analyses and secondary analyses constitute the evidence for research syntheses. Research synthesis, in turn, can make explicit useful connections between individual primary and secondary reports to contribute towards a more comprehensive understanding of the field. Research syntheses can strengthen the relationship between educational research, policy and practice by disseminating succinct representations of primary and secondary research, (p. 2) Research synthesis is based on the premise that inferences made during research review are as central to the validity of knowledge as those made in primary research (Cooper, 1982). All researchers conduct inquiry through a particular lens and this focus has a bearing on what is seen, recognized as significant, and ultimately reported. 24 Given the growing acceptance of the validity of research review as scientific inquiry, researchers have focused on comprehensive review methods. As a result, methods surrounding research review are evolving from statistical methods that gained popularity in the 1970s and 1980s to approaches such as MIRS, which strive to accommodate the growing diversity of method and perspective found in primary research. Suri (2002) insists “methodological inclusivity within the methods of research synthesis is essential to encapsulate such complexity of methods and results typical of primary studies” (p. 4). Clarity, expiicitness, and openness are the canons of rigour. There is a growing recognition in research synthesis, as well as in primary and secondary research, that these tenets may be pursued through a variety of quantitative and/or qualitative methods of sense making. After all, as stated by Mauch and Park (2003) “it is essential to choose the investigative approach that best promises to match the problem” (p. 22). Phases o f Research Synthesis Cooper (1982, 1998) and Suri (2002) both argue that the product of any review is influenced by the critical decisions made by the researcher in the process of synthesis. The choices made during the process of research synthesis are guided by the nature of the intended purpose of the product. In rigorous synthesis, it is essential for the researcher to reflect upon how the critical decisions were made and to map the process by which the final product results. Suri cites Wideen, Mayer-Smith and Moon (1998) in saying, “It is not uniformity in research reviewing and integrating that is desirable, rather it is clarity, explicitness, and openness - those properties t h a t ... impart to inquiry its “objectivity” and trustworthiness” (p. 20). The resulting transparency allows for readers to critically evaluate the levels of similarities, or dissimilarities, of the synthesis context with their own contexts, thereby improving the transferability of the product. 25 The research synthesis framework argued for by Suri (2002) builds on Cooper’s (1982, 1998) conceptualization of an integrative research review as a scientific inquiry. Cooper outlined five stages parallel to those found in primary research. These are the problem formation, data collection, data evaluation, analysis-interpretation, and public presentation stages. Within each of the proposed five stages. Cooper (1982, 1998) outlined methods to reduce potential sources of variance which may threaten the validity of conclusions. 1. Problem formation stage. This stage involves the formation of the problem and the definition of the variables both conceptually and operationally. These definitions guide the researcher in distinguishing relevant from irrelevant studies. When researchers apply different definitions or levels of abstraction to a particular concept, validity is threatened. Validity is also threatened when researchers vary in the attention they pay to methodological distinctions in the literature. To minimize the risk to validity. Cooper (1982,1998) suggests utilizing broader conceptual definitions and examining more operational details within the constructs examined. 2. Data collection stage. This stage involves making critical decisions concerning the population of elements that will define the inquiry. Differences in outcomes can occur as a result of using different methods to retrieve information. Cooper (1982, 1998) proposes validity is optimized by using the broadest methods of information collection, and at the same time qualifying conclusions by providing information regarding underrepresentation and overrepresentation of the inquiry’s target population. 3. Data evaluation stage. This step involves making critical judgments about the quality of individual datum and examining the data to see if it is contaminated by factors irrelevant to the problem under study. Cooper (1982,1998) insists on the use of transparent evaluative criteria to evaluate quality, and the adoption of wide confidence intervals to allow for possible incomplete reporting by primary researchers. 26 4. Analysis-interpretation stage. In this stage separate data points collected by the researcher are synthesized into a unified statement about the research problem. Cooper (1982, 1998) outlines the threats of misinterpretation that may emerge from varying interpretations and/or inference rules applied. Again Cooper insists the process used during this phase needs to be explicit and justified. 5. Public presentation stage. This stage involves communicating the processes used and results found during the synthesis. Cooper (1982,1998) cautions that the omission of details on how the review was conducted is a potential threat to the validity and transferability of the study. He indicates the second threat to validity in this phase is the omission of evidence that other researchers may find important. Cooper (1982) summarizes that “the supposition underlying this model of literature reviewing is that it is a data-gathering exercise which needs to be evaluated against scientific criteria” (p. 7). The review method must address validity and allow for direct replication. He also cautions that “similar to primary research, the perfect literature review does not exist” (p. 7), but indicates that those “synthesists who give considerable thought to how to present the most exhaustive report in the most readable manner will produce the most enduring documents” (Cooper, 1998, p. 180). The process outlined by Cooper allows for a method from which individual research can be synthesized into a coherent pattern of meaning. A limitation to Cooper’s model, as outlined by Bryan (2000), is its almost absolute adherence to quantitative methods of rigour. It does not easily allow for the inclusion of literature characterized by non-experimental, non-survey approaches to research, and it does not account for the insight that comes from interpretive scholarship. Eisenhart (1998) eloquently argues for the value of interpretive scholarship in research review. She expands on the concepts outlined by Cooper (1982, 1998) by reasoning there is much more to understanding issues than that which can be captured 27 in the integration of research studies that explore only correlational and casual relationships. She argues that interpretive review as a method provides other kinds of understandings. In reviews of research studies it can certainly be important to evaluate the results in light of established theories and methods. However, it also seems important to ask how well the studies disrupt conventional assumptions and help us to reconfigure new, more inclusive, and more promising perspectives on human views and actions. From an interpretivist perspective, it would be most important to review how well methods and results permit readers to grasp the sense of unfamiliar perspectives and actions; it would be less important how well methods and results could be “mortared [to what] came before.” (p. 397) Eisenhart (1998) outlines three potentially valuable outcomes that can result from involving an interpretive method of review. First is the potential of interpretive review to “reveal something surprising or startling or new; that is to present information that disrupts conventional thinking” (p. 392). Second, it provides for the exposure of different logics, or multiple ways of understanding the world that arise from a different sociocultural context. Finally, she argues interpretive scholarship is committed to utilizing research (including research synthesis) to improve communication and understanding across human groups; an intent clearly at the heart of any review. Eisenhart concludes that interpretive review ought to offer “surprising and enriching perspectives on meanings and circumstances”; it should “shake things up, break down boundaries, and cause things (or thinking) to expand” (p. 394). Schwandt (1998) supports and expands on Eisenhart's position of interpretive reviews by putting forward the notion that like knowledge, educational research is not always objectifiable or static. Knowledge of educational phenomena cannot be reduced to a scientific model which limits knowledge to the objective verification of regularities and where our situated selves have no bearing on what constitutes knowledge. To understand what it means to education (and what it means to educational inquiry) is to participate in the cultivation and acquisition of practical wisdom, (p. 411) 28 Schwandt continues his argument by insisting it is difficult to envision a static process as implied by traditional methods of research review. He argues that synthesis, like selfunderstanding, is an ongoing and constant process; therefore, he advocates for a method of review that is dynamic and interpretive. In presenting the case for utilizing an interpretive and integrative review as this study’s method of choice, it is important to note the intent is not to devalue either traditional or non-traditional methodologies. Rather the intent is to indicate that once in a while "it is worthwhile to look at the whole tapestry, the whole wall, or the whole forest, to see whether the individual pieces are fitting together as well as they might to form a strong, healthy or vibrant whole” (Bryan, 2000, p. 34). This study would be incomplete if the voices of practice and individuals with FASD were not viewed against those studies classified by their traditional rigour. As Bryan argues, there would be “no interpretive review without the myriad of discrete and rigorous research projects” (p. 34). This study represents a blending of methodological strengths in order to address the interrelated complexities found in studying the lifespan implications for FASD. Suri (2002) has developed a set of guidelines for methodologically inclusive research synthesis. He reasons that the methods of research synthesis and primary research hold a reflexive relationship, whereby the methodological developments at either level influence the methodological development at the other level. Suri (2002) argues that, “methodological inclusivity within the methods of research synthesis is essential to encapsulate such complexity of methods and results typical of primary studies reported within most domains of educational research” (p. 4). As in primary research. Suri (2002) proposes that multimethod research synthesis is guided by “explicit reflexivity” between the process and the product. In practice, the choices made during the process of a research synthesis are guided by the nature of the intended purpose of the synthesis product. In a rigorous synthesis, the synthesist iteratively reflects upon 29 the intended purpose of the product and maps the process accordingly. Also, the synthesist reflects upon how the critical decisions made in the process may shape the final product of the research synthesis. Synthesists may deliberately make certain methodological choices to pursue one purpose that would be made differently for another purpose. Likewise, certain methodological decisions will provide particular insights into a phenomenon that may be different from those found through alternative methodological decisions, (p. 6) Therefore, rather than prescribe rigid standards Suri (2002) proposed guidelines, or a framework, to facilitate transparent, informed choices at the critical decision points of research synthesis. Building on the established integrative review methodologies of Cooper (1982, 1998), Suri outlined six phases of research synthesis. 1. Framing the purpose and orientation. During this critical decision process. Suri (2002) outlines that research reviews may serve one or more purpose(s) to voice and/or challenge the concerns of different stakeholders in the production and use of educational research. He indicates these purposes may be met by utilizing a variety of theoretical and methodological orientations. He indicates clarity and breadth of reasoning during this process are crucial to the outcome and viability of the study. 2. Selecting the evidence. Selecting the evidence involved in any inquiry is clearly a critical decision process. Suri (2002) outlines that primary research reports, in their variety of states, form the evidence of a research review. The selection criteria and search strategies employed during the synthesis should be chosen as a result of their alignment with the study’s purpose and orientation. He argues for “purposely informed selective inclusivity” (p. 5), as practical constraints of time, resources, and access to information clearly impact on the rigour of the process as well as the methodological choices. 3. Distilling the information. During the synthesis. Suri (2002) indicates a variety of techniques and criteria may be employed to extract, interpret, and evaluate the relevant information from individual studies. The choice to use certain techniques and 30 criteria should be linked to the purpose or orientation of the inquiry and need to be delineated and substantiated by the synthesist. 4. Constructing connected understanding. Once the relevant information has been extracted it is connected through various lenses and strategies to construct understandings of different aspects of the phenomenon under scrutiny (Suri, 2002). This integral decision-making process is likely to evolve throughout the study, and it is clearly influenced by the perspective of the synthesist. Suri indicates that transparency and accountability are of particular importance during this phase and warns against using a “God’s eye view”, or purely interpretive view, that is sometimes attributed to research synthesis. 5. Sharing with an audience. Suri (2002) suggests that the overall structure, tools and techniques of the final review may be selected to match the intended audience and the impact that the synthesist wishes to make through synthesis. 6. Evaluating a research svnthesis. Suri (2002) indicates that every research synthesis should be evaluated for coherence between the purpose and the process, reflexivity between the process and the product, and transparency at every critical decision point of the process. The specific techniques for achieving these general criteria may be chosen and defended “in the light of different aspects of the synthesis design” (p. 6). Suri (2002) concludes by indicating these phases are likely to overlap and blend during the process of review. Considerations within each phase may inform and refine the process of other phases. As the process may not always be linear, he argues it is crucial the synthesist provide a critical and constructive commentary on the prevalent methods employed, and reflects “on the possible consequences that their decisions may have had in shaping the synthesis product” (p. 7). This ensures transparency in the process and enhances the transferability of the product. 31 The inclusive methods of Suri (2002), the interpretive method of Eisenhart (1998), and the integrative method of Cooper (1982) all recognize the role of the synthesist. The researcher influences the review in the selection, observation, and interpretation of the primary reports. An open recognition and discussion of the influence of the researcher, as outlined by Suri, allows for evaluation and transferability of the product. This explicit description of the study’s context allows future readers to adapt the synthesis product to their own context. Methodological Approach o f This Study At this point, it is necessary to relate this study to the methodological theory expressed above. Given that researchers, as human instruments, play a key role in observing and interpreting during a review process, it is important to start by discussing and delineating the views brought to this review. As Bryan (2000) indicates, “no two researchers will chose the same path through the woods” (p. 35). Therefore, this section will begin by documenting my personal influence, as a researcher, on the outcomes of this study. It will acknowledge the biases and the contextual background from which this study emerges in order to provide a framework for understanding the choices and decisions made during the outlined process. As a researcher, I am personally interested and invested in the outcomes of this study. I am a novice researcher, thus the results of this study will be subjective in that they will be subject to my personal limitations and construction of the data. Subjectivity in this study is inevitable and may lead to concerns regarding the transferability and generalizability of this study. A discussion of my perceptions surrounding FASD follows in order to facilitate external judgment. I have lived in rural Canada the majority of my life. For the past ten years I have worked in a rural college. I originally worked as a faculty member for several life skill programs involving at-risk adults and youth, and then in administration. This work has 32 included working closely with the community and all levels of college structure to develop and implement both intervention and prevention programs for individuals affected by FASD. In 2003, I was heavily involved in administering a national conference on FASD. This cumulative experience has resulted in direct exposure to the issues surrounding FASD. It brought the disability to my attention, and enhanced my awareness, knowledge, and sensitivity to the many challenges of working with individuals and families affected by this disorder. It has shaped my understanding of how individuals with FASD impact programs, services, systems, and policy. This direct experience will assist me in the role of interpreter, and the connections made during the course of my work will assist with the finding of primary reports. However, it is evident that I also bring certain biases to this study. Although methods will be used to ensure objectivity, or to clarify subjectivity, these biases shape the way I view and understand the research and reports I collect. I bring to this study the perspective that the lives of individuals with FASD often involve many challenges and heartbreak. I believe adults with FASD are individuals in need of recognition, continuous support, and understanding; yet many are isolated, alone, and living in sheer poverty. During my working experience I have heard stories so sad they are hard to tell, where the “what-ifs” in terms of FASD intervention, are so large they are incomprehensible. Despite these realities, this experience has also allowed me to see adults with FASD for their individual strengths, amazing persistence, and ability to live in the present. Another perspective I bring to this study is a firm belief that the majority of adults with FASD are misunderstood, unrecognized, and often asked to meet unrealistic expectations. I believe there is much that can be done to support these individuals and improve their lives. The key is the recognition of the pervasive and multigenerational reality of the disorder. I often wonder what a thorough understanding of this disorder at 33 the community, practice, policy, and research levels would mean for support and intervention in the lives of those affected. With respect to the study’s method, a multimethod synthesis such as that outlined by Bryan (2000) and Suri (2002) appeared to best match this study. The unique and truly human nature of the topic, in combination with the two emerging streams of literature, fit a multimethod approach to synthesis. Using interventions for adults with FASD as a focal point from which to focus and examine the work of others. I procured and read a significant amount of literature relating to the myriad of issues and characteristics of adults with FASD. In order to reduce bias, improve reliability, and therefore the strength of the conclusions, a common approach for identifying and retrieving the literature, as well as data collection and evaluation was developed. For simplicity, they are outlined below separately. Identifying the Literature The search strategy used was not linear, as noted by Suri (2002), but iterative and interwoven with literature retrieval. Efforts were made to ensure the review results were valid by focusing on the comprehensiveness and transparency of the literature search methods used. The selection criteria outlined in Table 2 were developed to guide the researcher in distinguishing relevant from irrelevant studies. Studies that did not meet the criteria were excluded from the study, as they did not pertain to the research question posed. From the onset of the study, it was recognized that in order to achieve a comprehensive and exhaustive search, a multidisciplinary approach would be needed. This is due to the multidisciplinary impact of FASD, as illustrated in long term studies (e.g., Streissguth et al., 1996). A wider search was required to capture all possible literature on interventions. In addition, as fetal alcohol syndrome or FAS was first defined in 1973, only publications between 1973 and the present were included. A search 2 34 Table 2 Literature Selection Criteria Inclusion Criteria Population Details Human 18 years and older, or defined as adult by study Prenatal alcohol exposure diagnosis or evidence of FASD Date of Publication 1973 to present Data Focus Literature must describe/detail/discuss adults with FASD and/or interventions for FASD, in the broadest sense, including programs, strategies, education, and medications Language All languages N ote: FAS D is F e ta l A lc o h o l Spectrum D isorde r of years prior to 1973 was not conducted. The search focused on interventions for adults 18 years and older affected with FASD. It involved a combination of electronic searching, the screening of literature references, and location of material through the researcher’s professional contacts. The literature search was not limited by language. Translation was found for those located articles that were not available in English. All articles located had abstracts available in English. To ensure clarity the different search strategies utilized are outlined. Electronic search strategy. The primary search strategy for this study was the electronic location of literature by the researcher. The first step involved the 35 development of a matrix of key search words, see Appendix A. To minimize the risk to validity, effort was made to ensure the list included broad conceptual definitions relating to FASD and interventions. Cited nomenclature found during the study’s proposal phase was used to create a base keyword list. This list was then expanded by utilizing the thesauruses of ERIC and PsyclNFO. This combination was chosen to ensure the key word list would include terms found in both social and medical databases. The resulting broad keyword list was tested in both ERIC and PsyclNFO and then further focused and expanded as a result of the results. The resulting search terms were divided into two concepts: Concept A included synonyms for FASD, and Concept B included synonyms for interventions. Testing of the identified terms was conducted to ensure the final keyword list was broad enough to ensure redundancy and focused enough to maximize time available and maintain relevancy. Both the concepts were then combined to find articles relevant to the research question. A flexible search strategy was developed and used for all identified databases. Free text searching (i.e. searching for keywords appearing in the title, abstract or subject headings) based on Concept A and Concept B was used in the majority of databases. However, In medical databases the search was limited to human subjects. This was to screen out the vast number of animal studies that did not pertain to this study. The searches were not limited to type of study, but included all types of literature related to interventions for adults with FASD including quantitative, qualitative, and descriptive. In order to capture multidisciplinary and international studies, academic databases addressing education, social, and medical fields were included; see Appendix B. In addition, databases from both the Canadian Centre on Substance Abuse (CCSA) and the National Institute on Alcohol Abuse and Alcoholism (NIAAA) were searched. 36 The final method of electronic location was a search of websites. To provide for replication, and account for viability, only those key websites recommended by the University of Washington, School of Medicine, Fetal Alcohol Drug Unit, in May 2005, were initially searched. Other websites were searched as a result of following up on links identified in these initial sites. The comprehensive FASD Connections website also provided several key websites to search. The resulting overlap in recommended links between these two sites ensured that the primary or key website pertaining to FASD and adults were located. Appendix B outlines all the electronic databases and web pages searched. Other literature location methods. Two other steps were taken to identify relevant literature. First, the reference lists of all obtained articles were scanned by the researcher as per the preliminary search criteria outlined in the next section. References that were relevant and not previously identified were located. Secondly, the researcher followed up with personal contacts made through the College of New Caledonia, Burns Lake campus, which has several programs, and therefore connections, pertaining to adult interventions. As well, literature references and contacts were obtained through attending the 2004 and 2005 FASD conferences hosted by The University of British Columbia. These steps provided breadth to the search, as they facilitated the location of literature not captured during the electronic search; thereby, providing a means to locate material that may be overlooked in an electronic search due to inaccurate or incomplete indexing. The literature search was an evolving process, resulting in a “spider’s web” of information location. This required the researcher to remain focused on the selection criteria established in order to ensure the results remained relevant to the research question. The main search occurred during May and June of 2005, however, the final search for relevant articles was completed on October 15, 2005. 37 Preliminary literature search. Initial searches were conducted as noted and all titles and abstracts were scanned by the researcher for FASD synonyms (Search Concept A) and intervention synonyms (Search Concept B). A consistent inclusion criterion was established to provide consistency and transparency to this stage and appears in Appendix C. Part One of the Data Extraction Form was filled out for each title and abstract located. During this initial scanning phase no concern was given to duplication. If Search Concepts A or B were unclear in the title, or abstract, the full article was collected in every case for scanning. In addition, the resulting yields of each search were noted. At this stage of the review, article methodologies, outcomes, and quality were not considered. The abstracts were reviewed and the researcher noted one of the following for each article: include the article in the review, exclude the article in the review, include as background/reference. Each article identified as relevant, as per the Inclusion criteria, was then located. Full articles were obtained that met both the selection criteria and Concept A, even if Concept B was not met. This was to ensure inclusivity because many descriptive articles contain recommendations for intervention. An effort was made during this stage to locate all primary sources in order to avoid misuse or misrepresentation of information. It was during this stage that duplications were noted. Data extraction. Given that much of the material was open to various interpretations, it is important to note that all data extraction was done by this researcher. To minimize subjectivity, effort was made to collect the data using the wording of the primary author or authors. The second part of the Data Extraction Form (see Appendix C) was used to provide a systematic basis for reviewing articles and extracting data. For each article of literature located, part two of the form was completed and inserted into a database. 38 Designing Part Two of the Data Extraction Form was an iterative process. Guidelines developed by Premji et al. (2004) were reviewed in relation to the articles located and a preliminary data extraction form was developed. This form was then adapted and refined based on the preliminary search results. It is important to note that the final data extraction form used for this stage of data collection reflects the descriptive nature of the majority of the literature identified. The form was therefore designed to capture the broad inferences predominant in this type of research, as well as to provide for an ecological and interpretive focus. The final step of data extraction involved only those articles which scientifically studied and evaluated interventions for adults with FASD. The development of Part Three of the Data Extraction Form (see Appendix C) focused on the analysis of intervention outcomes and scientific rigour and again built on the guidelines developed by Premji et al. (2004). This part of the form was designed to assess interventions in relation to generalizability, complexity, and strength. That is the specificity of the intervention to adults with FASD, the ease in which the intervention may be accurately reproduced and integrated into practice, and the long-term strength of the outcomes. Methodological quality was independently assessed by analyzing sample randomization, blinding of intervention, as well as follow-up and blinding of outcome measurements. The resulting form reflects the varied nature of the literature; therefore, it was not nearly as detailed as the forms outlined by Premji et al. The third part of the Data Extraction Form was filled out for studies of adultfocused FASD interventions. This provided for a consistent method of information retrieval, thereby reducing bias in the reporting of the results of the located studies. Data analysis. Data collection resulted in the generation of a database of information. Two main steps then occurred. First, the researcher assessed the overall quality of these studies in terms of interventions for adults with FASD. During this stage 39 those studies that focused on Interventions for adults diagnosed with FASD were analyzed and summarized by the researcher, then evaluated for scientific rigour. Due to the extremely limited number of intervention studies located, the second phase of analysis sought to integrate and interpret the main results of quantitative, empirical studies on adults with FASD with the main results of the descriptive and qualitative intervention literature on adults with FASD. During this stage the researcher chose to identify and focus on those areas considered important in promoting optimal functioning for adults with FASD. Common themes in intervention methods, considerations, components, and styles were also identified and the resulting data summarized by the researcher. At this point, it is important to consider the overall quality of the literature involved in the review. First, two streams of literature were considered. Stream I consisted of articles whose information was based on scientific studies of varying levels of scientific rigor (see Appendix C). Stream II consisted of articles whose information was based on clinical opinion and reports of collective wisdom or experience. The majority of available literature located belonged in Stream II. This must be considered when evaluating the findings. Second, although a concerted effort was made by the researcher to locate all primary sources to avoid misuse and misinterpretation of information, in those situations where a primary source was not located, secondary sources have been cited, and this information is interpreted cautiously. Overview o f Methodological Framework Because a multimethod approach to review synthesis, such as MIRS, is an emergent technique, the task of outlining this process of inquiry was difficult, yet essential to the integrity of this study. Again the researcher turned to Bryan (2000) who summarized a format of classification proposed by Cooper (1985). This classification of literature review, as a broad scientific endeavour, provided a useful format for 40 delineating the overall methodological framework used during this review; therefore, it necessitates some discussion. In 1985 Cooper defined, or classified, literature reviews according to their various foci and goals. These included (a) sizing up new substantive and/or methodological developments in a given field, (b) verifying existing theories or developing new ones, (c) synthesising knowledge from differing lines of research, (d) inferring generalizations about substantive issues from studies bearing on those issues, (e) highlighting important issues that research has not resolved, and (f) replacing studies that have fallen behind the research front. Given this breadth of intent. Cooper (1985) outlined a systematic and utilitarian taxonomy for classifying literature reviews according to their major characteristics. He proposed six characteristics, each including a variety of categories, upon which literature reviews could be viewed or critiqued. 1. Focus. Focus comprises the broad types of material that are of concern to the researcher: (a) research outcomes, (b) research methods, (c) theories, and (d) practices or applications. Cooper (1985) indicates these are not mutually exclusive, but tend to overlap in a given study. 2. Goals. The goals comprise what the researcher hopes to accomplish within the review. The most obvious and common goal is the integration or synthesis of past literature from the point of a particular issue. Cooper (1985) outlined this process, which may include formulating general statements from several specific instances, resolving conflicts between contradictory ideas, or bridging gaps between theories by developing a common linguistic framework. Other goals include critical analysis of existing literature, usually to disrupt past conclusions, and identification of issues central to a particular field. Again, any given study may have multiple goals. 3. Perspective. Perspective is the point of view employed by the researcher. The first being neutral or dispassionate; the second being espousal or advocacy of a 41 particular stance or view. Althougti these stances appear opposite, Cooper (1985) suggests they be viewed as the opposite ends of a continuum, rather than discrete and unconnected positions. 4. Coverage. Coverage is perhaps the most distinct and essential aspect of the review, and involves the extent to which the researchers locate and include appropriate works in their inquiries. Cooper (1985) suggested four possible approaches; (a) exhaustive coverage, in which the researcher purports to include all available literature, although not necessarily in great detail, (b) exhaustive with selective citation, in which all of the literature is considered but only a sample of the range cited, (c) representative coverage, in which samples are selected for criteria based on the extent to which they typify the categories from which they were chosen, and (d) central or pivotal coverage, where only new or heuristic selections or items which engender significant debate are included. 5. Organization. Organization relates to how the items or ideas included in the review are ordered for presentation. Cooper (1985) suggested there are three general approaches: (a) historically, in which topics are viewed chronologically, (b) conceptually, in which works relating to similar abstract ideas are grouped, and (c) methodologically, in which works similar in methods are considered together. Often these categories are not mutually exclusive, and there may be one principle category with others as subcategories. 6. Audience. Audience refers to the group of readers to whom the researcher chooses to present the material. Four possible audiences are suggested: (a) specialized scholars, (b) general scholars, (c) practitioners or policy makers, and (d) the general public (Cooper, 1985). The writing style is significant with respect to audience, and particular papers may contain essentially the same information, yet appear different because of stylistic variations aimed at different audiences. 42 As Bryan (2000) summarized, the above-noted scheme provides a useful format for summarizing the intent and process or framework of a research review. It remains, therefore, to outline this review in accordance with Cooper’s (1985) classifications. This review's focus was to clarify the issues facing adults with FASD and determine the efficacy of interventions and support. This involved a review of outcomes, theory and practice in addition to an analysis of methodology. A summative illustration of this process can be seen in Figure 1. This study’s goals were to identify and synthesize the issues/themes central to supporting adults with FASD. Attempts were made to identify and analyze intervention studies on adults with FASD, and to generate broad generalizations regarding FASD intervention. The two differing lines of research on adults with FASD were integrated and synthesized. The first involved the synthesis of the exhaustive scientific literature on adults with FASD; and the second involved the synthesis of a representative sample of the clinical wisdom and experiences of individuals, caregivers, and professionals. In an attempt to bridge the gaps between these bodies of research, and determine overall generalizations, the resulting data were interpreted and integrated by the researcher, as outlined in Figure 1. Common themes in the areas considered important to promote optimal functioning for adults with FASD were identified and summarized, as were the common themes occurring in intervention recommendations. These formed the basis for the development of an interwoven intervention model for adults with FASD, from which further studies can be interpreted. As this study involved quantitative, qualitative, and descriptive approaches, a transparent method for data collection and extraction, as noted earlier, was utilized for all studies located. This generated a database of information which allowed for the identification of common themes pertaining to intervention by the researcher. 43 DATA LOCATION Electronic Databases (academic & nonacademic) DATA SOURCE DATA COLLECTED Empirical Studies MODEL MODEL CONTEXT Optimal Functioning Considerations Description & Characteristics of Adults with FASD Key FASD Websites Components /\ Clinical Findings \ \ Data Extraction Process 1 / Article & Website Reference Lists Personal Contacts THEMES Data Coding ^ ( \ \ Direct Service Needs INTERVENTION MODEL \! Interventions for Adults with FASD Collective Wisdom & Practice Administration Approach Intervention Principles & Approaches (w/ individuals w orking in field) Figure 1. Generation of an Interpretive Intervention Model for Adults with FASD 44 This study's perspective was to synthesize the current extant streams of FASD literature in a dispassionate way. It is important to note that the particular lens brought to this study by the researcher impacted the effectiveness of the neutral view. For that reason the researcher’s biases have been outlined and discussed earlier. This study's coverage proposes to be exhaustive in terms of reviewing previous scientific studies on adults with FASD. In terms of synthesizing the qualitative results of practice and the voice of those directly impacted, this study is representative. It is important to note that not all of the studies examined were characterized by academic rigour. Rather, some sources were selected for their representation of the pervasive and personal context of this issue, as well as their representation of the results of practice. They formed an integral part of the ecological view of this study. This study's organization arranged the items and ideas of content and method in a conceptual fashion. This study's audience included three main targets including: specialized scholars, general scholars, and practitioners or policy makers. The writing style was modified to meet the needs of this broad target group. It involved a blend of technical writing with the occasional use of metaphor or a non-technical writing style. This process was used to yield the best evidence with regard to the goals of this review and the data available. 45 Results of Literature Search A literature search of multidisciplinary databases and websites generated 12,153 records or references. The scanning of reference lists and literature obtained through personal contacts generated 25 additional references, and inclusion criteria were used to determine their possible relevancy. The researcher scanned abstracts and chose 152 for full text retrieval, of which 144 were retrieved. Eight could not be located despite several attempts through personal contacts and inter-library loans; however, none of these articles involved an empirical study or evaluated adult interventions. Utilizing a data extraction form (see Appendix C) the researcher systematically collected information from the retrieved articles. Upon further analysis and critical review, 113 articles were included in the study because they met the criteria for inclusion. Data analysis revealed variability in the quality and coverage of the literature. The majority of the literature collected (68%) was clinically descriptive or anecdotal in nature. Of the articles retrieved, 32% were quantitative or qualitative empirical studies. Among the empirical literature located, three main areas of study were found: descriptive studies on lives of adults with FASD, longitudinal studies on adults with FASD, and experimental studies that looked at specific adult FASD characteristics. Of the 36 located empirical studies relating to adults with FASD, 56% had been published in the last five years. The review revealed that the University of Washington researchers authored 34% of the empirical studies on adults with FASD. No other single set of investigators accounted for such a large percentage of the published research on this topic. Three samples were utilized for the majority of the University of Washington studies, two involved random selection and one involved a large clinical sample. Four studies were located that met all of the inclusion criteria of the study. Three of the studies designed, tested, and evaluated interventions for adults with FASD (see Table 3). Two of these studies were Canadian and one American. The fourth study 46 Table 3 Intervention Outcomes for Adults with FASD Intervention Outcomes Education of service providers + paraprofessional advocacy^ Adults with FASD: T stabilized housing T access to medical health services t access to mental health services i drug and alcohol use t utilization of regular family planning method t collaboration and individualization of service Community Service: Î modifications of community services to meet needs of individuals with FASD t number of community service providers with FASD training Community capacity development + case management/advocacy^ Adults with FASD: i homelessness t access to health (physical & mental) and prenatal care Î income for 40% of participants i substance abuse T access to resources and services previously not available Î collaboration and individualization of service Community service: Î funding for community support services for adults with FASD Î number of community service providers with FASD training T community services available for adults with FASD Support circles + cognitive enhancement toois^ Adults with FASD: t access to advocacy T ‘prosthetic’ memory tools to aid with daily living tasks T preferred behaviours T access to resources and services previously not available Caregivers: T access to advocacy and support t buffer between participant and caregiver Community service: T number of community service providers with FASD knowledge Note. T = increase, •1- = decrease, 1. Grant, T., Huggins, J., Connor, P., Pedersen, J. Y., Whitney, N., & Streissguth, A. (2004). A pilot community intervention for young women with fetal alcohol spectrum disorders. Community Mentai Health Journai, 40(6), 499-511. 2. LaBerge, C. (2004). Manitoba FAS community mobilization: Project evaluation. Winnipeg, MN: Association for Canadian Living Manitoba. 3. Raymond, M., & Belanger, J. (2000). Literacy-based supports for young adults with FAS/FAE. (Project number; 1999/00-SL-5/S2). Victoria, BC: Author. 47 focused on the functional analysis needed to design adult interventions. It did not design or test an intervention. Analysis revealed that these preliminary studies did not meet the scientific rigor required to make generalized recommendations regarding efficacious interventions for adults with FASD. The analysis of all the above-noted articles is outlined in the next section. The remaining literature, which included a combination of empirical studies and articles written by clinical experts, practitioners, caregivers, and adults with FASD, was analyzed to provide a framework for potential future interventions. Intervention recommendations as well as the areas central to supporting adults with FASD were the focus of this analysis. Consistent themes and recommendations were found despite the fact that the literature originated from diverse settings and geographical areas. This analysis is outlined in the section. Discussion of Intervention and Support Themes. In summary, a systematic and transparent process was developed and undertaken by the researcher in order to minimize the bias and maximize the validity of the search. As a result, a comprehensive search was undertaken and the substantive literature relating to interventions for adults with prenatal alcohol exposure was located. The review also located the overall substantive empirical literature on adults with prenatal alcohol exposure, thereby allowing for an analysis of the predominant issues facing adults with FASD. Analysis o f Intervention Studies for Adults with FASD The literature review process utilizing the Data Extraction Form identified four studies that involved the research of interventions for adults with FASD. Three of the studies involved both the design and evaluation of interventions for adults with FASD, and the fourth study outlined a possible assessment approach to intervention design. All of the studies were located and analyzed by the researcher for generalizability, complexity, and strength. Given nonrandom sampling, small sample sizes, and a lack 48 of controls, formal assessment of efficacy was not able to be determined. The studies are summarized individually below. 1. Community Intervention for Young Women with FASD - Education o f Service Providers and Paraprofessional Advocacy. This one year, pre- and post- treatment outcome study by Grant, Huggins, Connor, Pedersen, Whitney and Streissguth (2004) explored the efficacy of a community intervention model. The model involved targeted education and collaboration with key service providers, in combination with intensive paraprofessional advocacy case management. For this intervention the original ParentChild Assistance Program (PCAP), reported to have been effective in working with highrisk alcohol abusing pregnant women, was modified to meet the needs of FASD clients. The authors hypothesized that modifying the PCAP program to meet the specific cognitive deficits associated with FASD would provide for effective, individualized interventions for women with FASD. Nineteen women, ranging in age from 14 to 36 years, with a FASD diagnosis, or noted characteristics, were identified from two active PCAP programs. Diagnostic and neuropsychological assessments were collected for each woman, confirming FASD diagnosis and providing a platform for intervention. Service providers from 15 major clinics and agencies (6 medical clinics, 5 mental health clinics, and 4 substance abuse clinics) were identified by the authors and received training on the physical, cognitive, and behavioural deficits associated with FASD. The PCAP supervisors and advocates received the same FASD training plus training in the day-to-day management of FASD clients. Both groups had experienced staff from the University of Washington's FASD clinic available for consultation upon request throughout the study. All the women were assigned an advocate who delivered home visitation and intervention services for a twelve month period, in accordance with the PCAP model 49 (Ernst, Grant, Streissguth & Sampson, 1999). The advocate supported and connected the women to ‘educated’ service providers on an individualized basis. Weekly consultation groups between advocates and supervisors were held to review assessment data, develop and tailor interventions, and address service and program barriers. Pre- and post- treatment information on personal goals and unmet needs were collected for each client by the case managers. This included information on medical and mental health care needs, housing needs, use and access to family planning methods, and alcohol and drug use. Treatment outcomes included decreased alcohol and drug use, increased use of contraceptives, increased access and use of medical and mental health services, and an increase in stable housing. Qualitative measures indicated the intervention did not result in the ability to independently access services, but it did increase the women’s use of services, which resulted in relatively stable contacts for the women. Modifications in the PCAP intervention approaches as a result of FASD were noted anecdotally. Advocates found they had to assume a far more directive role when assisting the women, and noted that these women had either extreme difficulty with or were unable to learn the skills needed to access and utilize support services or to reliably follow plans. Authors reported that the women would continue to need supported, coordinated assistance throughout their lives. Ongoing assistance with the pragmatic details of daily life and service access (e.g. transportation, scheduling, childcare) were seen as essential to the success of the intervention. Stringent and narrow institutional eligibility criteria and the lack of systemic or Ministry recognition of FASD as a disability were found to be barriers to needed services for the women. Overall, the authors qualitatively and quantitatively noted an increase in the women’s quality of life as a result of the intervention. In terms of community service providers, qualitative assessment indicated that direct FASD education, avenues for clinical consultation, and working in collaboration 50 with paraprofessional advocates increased community service providers' understanding of the underlying deficits of FASD. This reportedly resulted in service delivery which was appropriately tailored to the specific needs of the FASD client. Strategies for improved communication, consistency of service, as well as modifications of instructions and treatment plans were qualitatively noted. This pilot study demonstrated positive quality of life outcomes for women with FASD which were the result of paraprofessional advocacy and educated community service provision. However, the nonrandomized, uncontrolled design, combined with insufficient information on outcomes measured and the nature and duration of interventions had the effect of limiting the determinations of the causality of the outcomes. Therefore, the generalizability of the results needs to be viewed with caution. The sample size was small and it primarily involved young adults. The assessments were primarily descriptive, and the study noted short term outcomes only. The methodological limitations preclude any definitive conclusions regarding the efficacy of the interventions. However, as a pilot study it provided a strong foundation upon which further studies can be designed. The authors indicated that follow-up studies with this sample will include more extensive data collection to measure client and service provider behaviour change. 2. FASD Community Mobilization Project - Community Capacity Development and Case Management/Advocacy. This 15 month program, externally evaluated by LaBerge (2004), was the result of a community identified need for improved services and supports for adults with FASD. This project sought to test the effectiveness of a two­ pronged approach to intervention involving direct service in combination with community service capacity development. The project was based on the social scientific approach that the disability is not inherent to the individual; rather it is the result of social structure. The project looked to change the ability of the community to understand and respect the 51 needs of persons affected by FASD, thereby resulting in successful support and intervention. In terms of community development, the project focused on educating and linking with individuals and agencies working in the areas associated with FASD secondary disabilities. This included: education, employment, health, justice, parenting, housing, leisure/recreation, peer relations, income, and financial management agencies. Training on the effects and support needs associated with FASD was provided to a wide variety of government and community based organizations. Networks with 118 different agencies and programs were established through project presentations and direct collaboration via participant advocacy and case management. In addition, staff worked directly with several community groups to assist with program design, provincial advocacy, and applications for further funding. Direct support was provided to 103 adults with FASD who ranged in age from 17 to 47 years. The sample consisted of 70 men and 33 women. Clients were referred to the program through 21 community agencies. Individuals in the program either had an FASD diagnosis or were assessed by program staff to have characteristics consistent with FASD. Because the vast majority of adults affected by FASD do not have a diagnosis, the project believed that requiring one would exclude many people it aimed to support. Direct services, through clinical case management and direct support work, were premised on an organic, participant-centred approach. Participation was voluntary and involved an intake assessment by the case managers to determine individual support needs. Quantitative and qualitative assessment of the intervention indicated a wide range of individualized supports and advocacy were provided in the areas of justice, health, housing, employment, income, parenting, and family planning. Analysis of referral and project case files revealed the following areas were identified by the clients 52 and referral agencies as intervention priorities: access to adequate housing, income and support workers: support for substance abuse treatment, medical needs, mental illness and vulnerability, and flexible and timely crisis interventions. Project staff worked in collaboration with community agencies to provide direct services for participants. Qualitative assessment by the external researcher indicated that prior to the study there was an absence of any kind of programming specific to adults living with FASD within the community. In addition, the FASD knowledge among service providers was noted to be inconsistent and spotty. After 18 months, assessment revealed that a community resource guide for adults with FASD had been generated and networks established with a cross section of community service providers. Qualitative assessment revealed that the project impacted service providers’ perceptions with respect to the relevance of FASD to their work and empowered them in their ability to work more effectively with participants. Several changes in community service provision to better meet the needs of FASD-affected individuals were noted. Reflections from the community providers stressed the importance of a non-judgmental, multigenerational, harm reduction approach to supporting individuals and families. In terms of direct services, the evaluation indicated an increase in personal income and a decrease in homelessness and substance abuse. Practical assistance with daily living concerns was provided. The results noted that many participants were connected to and found eligible for community programs and services they had previously been unable to access. All the participants received appropriate case management, and clinical assessment, and they all reported being empowered to make positive changes in their lives. Overall, the qualitative assessment results indicated the project was viewed at the community level as effectively filling the gap in existing services and supports for adults living with FASD. The expectations of community providers and participants were reported to have been exceeded. 53 This project evaluation demonstrated that case management and advocacy combined with community capacity development can result in positive outcomes for adults with FASD. The study was limited, however, by its descriptive nature and the sheer complexity of the interventions included in the evaluation. Other limitations included the lack of a diagnosed sample and transparent pre- and post- treatment assessment. Insufficient information on the type, frequency, and duration of interventions, as well as insufficient information on the screening tool used was also limiting. Causality of the outcomes can not be determined, and the outcomes of this study should be viewed with caution. 3. Literacy-Based Community Support Circles and Cognitive Support Tools - Support Circles and Cognitive Enhancement tools. This case study by Raymond and Belanger (2000) sought to study the advantages and disadvantages of literacy-support tools designed to assist with the daily living challenges faced by individuals with FASD. The authors hypothesized that the development of literacy-based support circles and cognitive compensatory tools would assist with everyday memory failure, disorganization, and social isolation. Five individuals with FAS or FAE diagnosis who were aged 16 to 34 years and had supportive caregivers or parents were involved in this pilot case study. The Vineland Adaptive Behaviour Scale (VABS) and Scales of Independent Behaviour - Revised (SIB-R) were administered to assess each participant’s ability to live independently. Assessment data combined with information reported by caregivers provided the basis for the researchers to develop and design support circles and prosthetic' cognitive enhancement tools. These two interventions were each evaluated. A support circle was formed for each participant to help extend and support the individual’s functioning in the community. Support circles were described as formal and informal and consisted of the researcher, primary caregiver and members of the 54 community who were friends with and concerned about the participant. Formal support circles met regularly and followed the Directions program, whereas informal support circles formed and met on an irregular basis to solve emergent problems. Both of these voluntary support circles were unsuccessful in involving paid support workers, such as social workers. The Directions program was designed by the researchers to provide consistency to the formal meeting structure, and a method for individuals to participate in self-assessment and future planning. Training in support circle theory was provided to all and formal meetings were held monthly. Anecdotal information indicated variability in both the participants’ and volunteers’ interest and motivation for participating in support circles. It was noted that the format of the meetings did not account for participants’ cognitive limitations; thereby, it limited direct participation. Qualitative assessment indicated the support circles did not need to be literacy based, were not successful in building social bridges, and were difficult to sustain. However, the researchers indicated the support circles were powerful in terms of advocacy and resulted in increased access of support services. Literacy-based cognitive tools were the second area of intervention assessed. A weekly magnetic calendar, cleaning support tool, and student tracker system were designed by the researchers and caregivers to assist with daily memory, organization, and planning. The researchers reported that emphasis was placed on making the tools simple, sequential, explicit, and concrete. Designs focused on function and realistic adaptable expectations. They also incorporated non-judgmental positive feedback. Qualitative assessment indicated the tools, all of which were introduced, sustained, and modified by the caregiver, were effective in assisting participants overcome some daily living challenges. The tools were reported to create a positive buffer between participants and their careproviders and resulted in an increase in preferred behaviours. In addition, the tools were seen to improve communication with support providers, and 55 an ability to perform more independently was anecdotally noted for all participants. All tools required ongoing evaluation and modification, and although simple in design, were reported to be difficult to implement. A grocery aid, problem journal, task list, and telephone message board were also designed as a result of the study but were not assessed. In addition to those items directly studied, two additional components were found to impact the efficacy of the interventions. First, the authors noted that the sheer desperation in which the individuals with FASD and their parents or caregivers were living had a direct impact on study outcomes. Evidence of high levels of stress combined with a complete lack of community service support and Ministry or systemic level recognition of this disability was noted for each participating family. The authors argued that adequate services, support, and respite care for the families were needed to provide a viable context for assessment of successful interventions to occur. The other component anecdotally noted to have a significant impact on the efficacy of the interventions was friendship. The participants were found to be very susceptible to the influence of friendships, whether transient or long term. “Friends” were seen to have direct positive and negative impacts in the willingness of the participants to be involved with, use, and sustain interventions. A collaborative, consistent approach with all individuals interacting in the participant’s lives was noted by the authors to improve outcomes. This preliminary study was limited by its case study design, lack of pre- and post­ treatment assessment, and a lack of information on sample demographics. Insufficient information regarding method, combined with a lack of information on intervention integrity, prevent reliable conclusions from being drawn regarding the effectiveness of the interventions. However, this study is clearly the first to develop, design, and test ‘prosthetic’ memory tools specifically for adults diagnosed with FASD. Several initial 56 positive outcomes in terms of increased ability to perform tasks independently were noted. As the outcomes were assessed qualitatively by those individuals providing and designing the intervention, the outcomes of this study need to be viewed with caution. 4. Functional Analysis o f Problem Behaviour. This single case study by Dyer, Alberts and Niemann (1997) set out to design a treatment for an 18-year-old male diagnosed with FAS, learning disabiiities, attention hyperactivity disorder, and conduct problems. The authors hypothesized that a thorough understanding of the possible environmental and neuropsychological variables contributing to the participant’s behaviour would lead to effective treatment. Environmental factors were assessed through functional analysis. This involved interviews with caregivers in combination with observing the participant in everyday environments and conducting systematic manipulations of environmentai variables to observe effects on behaviour. Deficits in neuropsychoiogical functioning were assessed utilizing the Halstead-Reitan Neuropsychological Test Battery, a standardized test that measures behaviour output. The functional analysis revealed high levels of behavioural problems in unstructured situations and lower levels of problem behaviour in highly structured environments. The neuropsychological assessment revealed an individual who tested well on the verbal and the superficial level but showed a significant degree of disability when there was a need to impose structure or meaning on a situation. This assessment concurred that the participant would not manifest deficits in all situations, and that problem behaviours would arise in complex or minimally-structured environments which required the imposition of order and meaning on the situation in order to behave adaptively. As a result, the authors recommended the individual would be best suited to a supported living situation that provided a high amount of structure and the opportunity to engage in supervised and acquired routines. The authors did not design or evaluate 57 an intervention in this study; however, they did illustrate the value of functional analysis of behaviour as a foundation for effective intervention or treatment design. Implications for Intervention Efficacy Efficacy of intervention is best addressed by specific, randomized controlled trials of adequate sample size. Due to the lack of randomized controlled trials, the complexity of the interventions, the lack of blinding of the intervention and outcomes, and the lack of long term outcome assessment, none of these preliminary studies could be assessed for therapeutic efficacy. Furthermore, bias in these nonrandom studies must be considered as they did not control for known confounding factors, such as comorbid diagnoses, or unknown confounding factors, such as postnatal environments and life history. Therefore, the causality of the outcomes cannot be determined, nor can the results be seen as specific to FASD. Furthermore, the samples were extremely limited with three of the studies involving only very young adults with FASD, and the fourth not requiring diagnosis. The limited number of studies and small sample sizes result in methodological validity concerns and provide limited reliable data from which generalized recommendations for efficacy can be determined. In addition, these studies were all undertaken in larger urban settings. Implications for rural settings with reduced access to range of services and/or professionals would require further testing. 58 Discussion of Optimal Function Considerations It is logical when designing an intervention to understand the main characteristics that comprise the disability, and how these characteristics impact human function. Due to the lack of research on specific interventions for adults with FASD, the researcher turned to information collected from scientific research, practical knowledge, and collective lived wisdom. A representative portion of the anecdotal literature (Stream II) and a substantive portion of available scientific research (Stream I) were reviewed to identify the characteristics of individuals affected by prenatal exposure to alcohol and the factors needed to ensure optimum functioning for adults with FASD. These characteristics and factors provide a lens or framework from which to view, assess, design and evaluate interventions. The following sections contain summaries of the diverse cognitive, physical, and behavioral characteristics of adults with FASD that impact six types of functioning. These are: executive functioning, mental health, physical health, interpersonal skills, lived experience, and adaptive functioning. The executive functioning section covers difficulties in cognitive processing, such as memory, impulse control, attention, decision making, and information processing. The mental health section covers the complex co-morbid mental health issues including emotional regulation, mental illness, and addictions. The physical health section covers issues pertaining to overall physical health, assessment, and family planning. Hearing, visual, and motor impacts are also covered in this section. The interpersonal skills section covers difficulties in communication, social competency, expressive language, and receptive language. Life experiences and the environment are covered in the livedexperience section. The final section on adaptive functioning reflects the integrated impact of the above-noted difficulties, and covers the difficulties experienced with functioning independently in key areas of daily life. 59 The discussion in these sections will employ a compensatory approach to addressing the core problems associated with FASD in adulthood because there has been no research to date that has focused on potential brain plasticity in individuals with FASD (LaDue, Schacht, Tanner-Halverson & McGowan, 1999). Research has, however, documented lasting structural CNS damage into adulthood (Riley et al., 2004). Interventions will focus on making compensatory changes in the environment and expectations to accommodate these permanent organic deficits. Punitive measures or measures that seek to cure the permanent organic disabilities in reasoning, judgment, and memory are not considered by the researcher as viable approaches to intervention for this population. Executive Functioning The composite literature on adults with FASD clearly indicates direct structural damage to the central nervous system (CNS) has the greatest impact on optimal functioning in adults with FASD. Results indicate the micro to macro level CNS damage resulting from prenatal alcohol exposure lasts into adulthood (Clark, Li, Conry, Conry, & Loock, 2000; Riley et al., 2001; Riley et al., 2004). Although much research is still needed and current neuroanatomical and neuropsychological studies need to be considered with prudence, it is also clear that the neurobehavioural outcomes resulting from CNS deficit directly impact functioning abilities (Bookstein, Streissguth, Sampson, Connor & Barr, 2002; Brock, 2000; Connor, Sampson, Bookstein, Barr & Streissguth, 2000; Dyer et al., 1997; Kodituwakku, May, Clerlcuzio & Weers, 2001). This literature review revealed that the majority of extant studies on adults with FASD have focused on detailing cognitive outcomes and impairments. Research, observations, and lived experiences suggest that this lasting structural brain damage is often deceptive. Adults with FASD are frequently characterized as having 'consistent inconsistencies', both behaviourally (LaDue, 1993) and cognitively 60 (Loock & Clarren, 2004). Thus, they have been described as individuals who may be able to articulate ideas but are unable to comprehend or follow through with appropriate action (Lutke & Antrobus, 2004; Schmidt, 2005). They display wide variations in areas of cognitive competence, deficits that cannot be predicted by IQ, and do not fit a mental retardation model (Clark, 2003; Kerns et al., 1997). Despite this variation, however, the results suggest it is during tasks involving complex behaviour and therefore complex cognitive processes (known as executive function) that a common pattern of deficit emerges. The composite literature suggests that although a thorough cognitive assessment is important for intervention, it is executive functioning that needs to be considered to determine optimal outcomes and supports for adults with FASD. A history o f executive function results. The confirmation of a continuum of mental dysfunction over time was first noted in two cases of adults with FAS in 1978 (Streissguth, Herman & Smith). Clinical observations, follow-up studies, and livedexperience reports soon noted that impairment in IQ was not the only CNS problem facing individuals as they matured (Dorris, 1989; Streissguth et al., 1991; Streissguth, LaDue & Randels, 1988). Difficulties with judgment, generalization, impulsivity, attention, and abstract thought; as well as difficulties recognizing consequences of actions and an apparent inability to learn from mistakes began to be documented. The results suggested these difficulties were often masked by superficial verbal skills and exacerbated by the increasing autonomous functional and problem solving demands of adulthood (Streissguth et al., 1988). In the first systematic follow-up study on adults with FASD (Streissguth et al. 1991; LaDue, Streissguth & Randels, 1992), it was noted that the more abstract the task and the more memory needed, the poorer these adults performed. Adequate performance on rote aspects of word recognition and spelling failed to reveal difficulties in basic comprehension and problem solving abilities (LaDue et al., 1992). Following up 61 on these initial results, two studies were undertaken (Kerns et al., 1997; Kopera-Frye, Dehaene & Streissguth, 1996). These studies were pivotal as they began to illustrate that deficits in complex cognitive processes, or executive functions resulting from prenatal alcohol exposure could not be predicted by IQ or dysmorphology, and had direct implications for optimal life, work, and social functioning of adults with FASD. Since then, convergent results from independent studies, as well as clinical and professional observations and lived experience reports have corroborated and expanded these initial results (Baumbach, 2002; Berg, Kinsey, Lutke & Wheway, 1997; Bookstein et al., 2002; Breen, 2000; Brock, 2000; Coles, 2003; Connor et al., 2000; Connor & Streissguth, 1996; Conry & Fast, 2000; Dubenski, 1997; Dubovsky, 1998; Dupuis & Urness, 2004; Dyer et al., 1997; Graefe, 2003; Grant et al., 2004; Kleinfeld et al., 2000; Kodituwakku, May, Clericuzio & Weers, 2001; LaDue, 2002; Lutke, 1993; Lutke & Antrobus, 2004; Lyons, 2004; Michaud & Michaud, 2003; Nanson & Brock, 2000; Novick & Streissguth,1996; Raymond & Belanger, 2000; Rice, 1992; Riley et al., 2004; Rutman et al., 2002; Schmidt, 2005; Streissguth, 1997; Streissguth et al., 1996; Streissguth, Bookstein, Barr, Sampson, O'Malley & Young, 2004; Trudeau, 2002). The literature illustrates that although the cognitive outcomes for adults with FASD are characterized by their variance, adults with FASD often display an overall deficit in executive functioning. The composite literature articulates and supports the need to assess the full range of executive functioning skills when designing interventions for adults with FASD. Executive functioning deficits. Executive functions involve the ability to plan and organize, self-regulate and sequence behaviour, and employ cognitive flexibility and response inhibition (Connor et al., 2000). These are future-oriented processes which depend on the integration of intact basic cognitive functions. Impairment results in pervasive dysfunction (Bookstein et al. 2002; Brock, 2000; Connor et al., 2000; Dyer et al., 1997; Kodituwakku, May et al. 2001) such as difficulties with information processing. 62 critical reasoning, and appropriate self-regulation. The results indicate that much complex behaviour requires executive functions, especially human social behaviour (Baumbach, 2002). In addition, executive functions are essential to deliberate tasks, such as holding and manipulating information (i.e. working memory) and focusing on one thing at a time (i.e. inhibiting task-irrelevant habitual responses) which is crucial to effective information processing (Kodituwakku, Kalberg & May, 2001). Executive functioning deficits in adults with FASD often hamper their ability to imagine abstract concepts such as time, money, truth, and the future. This inability to imagine anything beyond the concrete may be the underlying reason for many of the difficulties seen with money management, employment, ownership, motivation, and responsibility. It may also explain the inability to predict outcomes of action. As a result of diminished executive functions, adults with FASD often have difficulties translating information into action or appropriate behaviour, generalizing information from one situation to another, and comparing, contrasting, sequencing, predicting, and judging experiences or events in their lives (Brock, 2000; Connor et al., 2000; Conry & Fast, 2000; Dorris, 1989; Dyer et al., 1997; FAS/E Support Network, 1995; Graefe, 2003; Grant et al., 2004; Kleinfeld et al., 2000; Kodituwakku, May, et al., 2001; LaDue et al., 1992; Lutke, 1993; Lutke & Antrobus, 2004; Massey, 1997; Raymond & Belanger, 2000; Rice, 1992; Rutman et al., 2005; Schmidt, 2005; Streissguth, 1997; Trudeau, 2002). These difficulties may explain the rigid thinking, the difficulty learning from mistakes or consequences, and deficits in the ability to apply what has been learned before to novel situations. It may also explain why adults with FASD are often unable to understand the effect their behaviour has on others, and why they have difficulties with the subtle and complex interactions that underlie personal and social relationships. 63 Difficulties with the integration and synthesis of information, as well as difficulties with inhibition and motivation have also been noted as a result of executive functioning deficits (Brock, 2000; Connor et al., 2000; Dorris, 1989; Dyer et al., 1997; Kerns et al., 1997; Kodituwakku, May et al., 2001; LaDue at al., 1992; LaDue, 2002; Lutke & Antrobus, 2004; Raymond & Belanger, 2000; Schmidt, 2005; Streissguth, 1997; Trudeau, 2002). Adults with FASD may often appear competent at a superficial level yet are unable to impose structure and meaning on a situation (Clark et al., 2004; Dyer et al., 1997; Grant et al., 2004; Kerns et al., 1997; Kleinfeld et al., 2000; Lutke, 1993; Malbin, 2002; Rutman, LaBerge & Wheway, 2005; Schmidt, 2005; Streissguth et al., 1991; Streissguth et al., 1996; Streissguth & Kanter, 1997; Trudeau, 2002). Studies have shown that the presence of executive function deficits, rather than overall intellectual deficits, predict difficulty in carrying out daily functions (Bookstein et al., 2002; Brock, 2000; Connor et al., 2000; Kerns et al., 1997; Kodituwakku, May, et al. 2001). In particular results from Kodituwakku, May, et al. (2001) indicated deficits in emotional executive functioning were particularly debilitating and robust predictors of behavioural problems. The impacts of executive functioning disabilities affect all areas of life for adults with FASD. As Connor et al. (2000) summarize: Because of problems of abstraction, planning and problem solving with which these patients present, it is important to plan out contingencies for as many possible problems that they may face during the course of their daily lives. This suggests that many patients with FAS or FAE who display executive functioning deficits will have great difficulties with independent living and will often need a caretaker to assist them with many life activities, (p. 351) Lutke and Antrobus (2004) illustrate the impact of this pervasive deficit by utilizing the following quote: Human learning and behavior are dependent upon the ability to pay attention to critical features in the environment; retain and retrieve information; and select, deploy, monitor, and control cognitive strategies to learn, remember and think. Without these abilities, we could not plan. 64 solve problems or use language. Likewise being absent of the capacity to attend, remember, organize and structure data within our world, we would be incapable of modifying our behavior when confronted with new situations. More directly, it would be impossible to generalize what we already know to novel situations and to acquire new concepts and strategies in coping with current, anticipated and forthcoming events if we were not vigilant and attentive, if we could not remember the relevant cues in the environment that led to previous reinforcement, and if we were not strategic in our efforts. Thus, attention, memory and executive function (mental control processes) play a central role in thinking, problem solving, and other complex symbolic activities involved in oral language, reading, writing, mathematics and social behavior. (Lyon & Krasnegor, 1996, p. 3) These results suggest that executive functioning deficits may explain why high levels of support are required for adults with FASD even though studies have revealed the majority have IQs greater than 70 (Clark et al., 2004; Russell, 2002; Streissguth et al., 1996; Streissguth et al., 1991). Composite results clearly indicate that executive functioning deficits need to be considered when designing or evaluating interventions and supports for adults with FASD. Variations in executive functioning results. Executive functioning deficits appear to occur on a continuum in adults with FASD, with individuals displaying a range of competencies and deficits (Bookstein et al. 2002; Brock, 2000; Connor et al., 2000; Dyer et al., 1997; Kerns et al., 1997; Kodituwakku, May, et al. 2001). This finding suggests that a uniform or standardized approach to intervention is unlikely to be successful (Clark et al., 2000; LaBerge, 2004). Furthermore, results suggest that individual patterns of competency, or function, appear to fluctuate as a result of familiarity, structure, fatigue, supervision, and emotional state (Dupius & Urness, 2004; Dyer et al., 1997; Grant et al., 2004, Kleinfeld et al., 2000; Malbin, 2002; Schmidt, 2005). Deficits have been found to be exacerbated in novel, complex, and minimally structured situations that require an imposition of order and meaning (Dyer et al., 1997). Optimal executive functioning, therefore, may be supported when environments are supervised, structured, and predictable (Dyer et al., 1997; FAS/E Support Network, 65 1995; Graefe, 2003; Kleinfeld et al., 2000; Lutke & Antrobus, 2004; Lyons, 2004; Malbin, 2002; Schmidt, 2005; Trudeau, 2002). Environments that provide external cues and minimize distractions are also recommended (Graefe, 2003; Grant et al., 2004; Malbin, 2002; Raymond & LaBerge, 2000; Schmidt, 2005; Trudeau, 2002). In addition, many authors suggest pervasive deficits in executive functioning are best supported through provision of an 'external brain' via an advocate or case manager (e.g., Streissguth, 1997). Information processing and decision making deficits. Deficits in executive functioning hamper information processing and learning in adults with FASD, especially during times of distraction (Brock, 2000; Connor et al., 2005; Kerns et al., 1997; Kodituwakku, May, et al. 2001). Results indicate that adults with FASD may have problems with any of the following stages of information processing: recording, interpretation, storage, retrieval, and utilization (Dupuis & Urness, 2004). Brock (2000), Kerns et al. (1997) and Kodituwakku, May, et al. (2001) found that learning new material was particularly difficult for adults with FASD. Individuals were surprisingly unable to acquire expected amounts of information even with repeated learning trials. The ability to retrieve learned information did not appear to pose as many difficulties. This indicated there may be greater difficulties at the encoding and acquisition stage than at the retrieval stage. These results suggest that the ability to learn and retain information may be enhanced by demonstrations of independent mastery and rehearsal of newly learned material before teaching new concepts (Brock, 2000; Grant et al., 2004; Kerns et al., 1997). Keeping the pace of learning within the individual's capacity and provision of external cues may also be helpful (Brock, 2000; Kerns et al., 1997; Kodituwakku, May, et al., 2001; Schmidt, 2005). The ability to learn and retain may be enhanced by giving concrete directions, employing multiple modalities of presentation, and repeating 66 information over time and in a variety of contexts (Connor et al., 2000; Dupuis & Urness, 2004; Grant et a!., 2004). Grant at al. (2004) also suggest simple step-by-step instructions and illustrations at the fifth grade level. Consistency in service providers and physical environments are also recommended (Grant et al., 2004). Environments in which there is pressure for rapid production and in which tasks shift frequently would not be a good fit for these individuals; especially if there was a lack of clarity about the requirements of the task (Connor et al., 2000; Dyer et al., 1997). Memory supports and external memory aids may also assist with information processing and support greater independence in adults with FASD (Graefe, 2003; Kleinfeld et al., 2000; Lyons, 2004; Raymond & Belanger, 2000; Trudeau, 2002). Kerns et al. (1997) found that external cues and organization of material assisted with encoding and retrieval. The teaching of rehearsal strategies and reflection skills, such as self talk, may also assist with recall and decision making (Brock, 2000; Graefe, 2003; Kleinfeld et al., 2000; Streissguth et al., 1996). These skills may be taught by modeling problem solving strategies in as many different contexts as possible and through reminders to stop and think when confronted with problem situations (Kleinfeld et al., 2000; Streissguth, 1997). In addition, adults with FASD have indicated that learning about the disability itself has assisted them with increased self-recognition of problem situations and the development of better decision-making abilities (Berg et al., 1997; Kleinfeld et al., 2000; LaBerge, 2004; Massey, 1997; Rutman et al., 2002; Schmidt, 2005). Creating predictable routines in as many areas of life as possible and providing for an advocate to assist with memory and interpretation are other common suggestions for assisting with decision making. Recent executive function studies. Three recent studies have provided further insight into executive functioning deficits for adults with FASD. The corpus callosum is the structure in the brain that allows for interhemispheric communication and 67 coordination of actions, both of which are involved in executive function. Building on findings that associated callosal dysplasia with alcohol exposure, Bookstein et al., (2002) compared callosal shape with neurobehavioural outcomes in adults with FASD. Bookstein et al. (2002) found a remarkably specific association of callosal shape variation with two distinct behavioural profiles in a small controlled sample. They found that adults with FASD could be characterized as having thick or thin callosum. Those individuals with a relatively thick corpus callosum showed distinct deficits in executive function; whereas, those individuals with a relatively thin corpus callosum displayed distinct deficits in motor function. This study suggests that specific brain imaging profiles in combination with neuropsychological tests may be beneficial to assessing executive functioning deficits in individuals with FASD (Bookstein et al., 2002). In addition, these results may explain some of the variability seen in executive functioning outcomes. Connor et al. (2000) sought to determine which psychological tests were sensitive to measures of executive function deficits in adults with FASD. Their results suggest that deficits in the ability to: shift tasks, maintain complex attention, perform visuospatially-mediated tasks, and maintain and manipulate information in working memory were specific to prenatal alcohol exposure and could not be accounted for by lower IQ only. They found that executive functioning scores on the Wisconsin Card Sorting Test (WCST), the Stroop performance scores, the Trial Making time scores, Ruffs Figurai Fluency Test (RFF) performance scores, and the Consonant Trigrams Test (CTT) were specific to alcohol damage. Whereas, executive functioning deficits shown by the Controlled Oral Word Association Test (COWAT), Stroop error scores, California Verbal Learning Test (CVLT), RFF perseveration scores. Trials Making error scores could be explained by IQ deficits alone. Results indicated that for FASD adults with an IQ below 80 there seemed to be no possibility of an acceptable performance on executive functioning composite scores. 68 Kodituwakku, May, et al. (2001) assessed the effects of emotion-related executive functioning versus the effects of cognitive-related executive functioning in adults with FASD. Their results indicate that emotion-related executive functioning, that is the ability to modify behaviour in response to changing positive or negative reinforcement conditions, was particularly impaired. Further research in this area may better explain the difficulties in learning from consequence that are often described for adults with FASD. However, these results are all preliminary and further study combining neuroanatomical and neuropsychological outcomes are needed. These studies did show that neuropsychological damage resulting from prenatal alcohol exposure is unrelated to facial dysmorphology or IQ (Bookstein et al., 2002; Connor et al., 2000). This confirms that it is the brain damage, not the facial dysmorphology, that should be the focus of interventions for adults with FASD, and that the individual uniqueness of the brain damage that must be considered when planning interventions or supports. Despite some variations in the literature and a need for further studies combining neuroanatomical and neuropsychological outcomes the overall theme is consistent. Deficits in executive functioning should be considered when developing interventions or supports. Furthermore, the literature indicates that deficits resulting from diminished executive functioning are pervasive and directly impair an individual's ability to function on a day-to-day level. The underlying structural CNS impairment linked to these deficits suggests that interventions or supports should focus on being compensatory, a "life vest", rather than curative. Mental Health Adults with FASD are at significant risk for problems of mental illness. Rates of mental illness, inappropriate sexual behaviour, and substance abuse have been found to increase during adulthood and have serious implications for interventions and supports 69 (Baer, Sampson, Barr, Connor & Streissguth, 2003; Baumbach, 2002; Berg et al., 1997; Bert & Bert, 1992; Brownstone, 2005; Bund, Cotsonas-Hassler, Martsof & Kerbeshlan, 2003; Chun, Streissguth & Unis, 1999; Clark et al., 2004; Conry & Fast, 2000; Copeland & Rutman, 1996; Dorris, 1989; DubenskI, 1997; Dubovsky, 1998; Dyer et al., 1997; Famy, Streissguth & Unis, 1998; Grant et al. 2004; Grant, Huggins, Connor & Streissguth, 2005; LaBerge, 2004; LaDue, 2002; LaDue et al., 1992; Lemolne & Lemolne, 1992; Lutke, 1993; Lutke & Antrobus, 2004; Lyons, 2004; Malbln, 2002; Massey, 1997; Mitten, 2003; NIccols, 1994; Novick & Streissguth, 1996; Raymond & Belanger, 2000; Rutman et al., 2002; Schmidt, 2005; Streissguth et al., 1996; Streissguth et al., 1991; Streissguth, Moon-Jordan & Clarren, 1995; Streissguth & O'Malley, 2000; Yates, Cadoret, Troughton, Stewart & Gulnta, 1998). Adults with FASD are often described as being extremely vulnerable to victimization and manipulation, and studies have concurrently revealed high rates of physical, verbal, and sexual abuse (Brownstone, 2005; Clark, 2003; Clark et al., 2004; Grant et al., 2005; LaDue, 2002; Massey, 1997; Rutman et al., 2002; Streissguth et al., 2004; Streissguth et al., 1996; Streissguth et al., 1991). Furthermore, high rates of suicide Ideation and attempts have been noted (Massey, 1997; Rutman et al., 2002; Streissguth & O'Malley, 2000; Streissguth et al., 1996). These findings Indicate that mental health Is an area that must be considered for optimal function In adults with FASD. Psychiatric iiiness. Results have consistently revealed high levels of psychiatric Illness In adults with FASD (Burd et al., 2003; Chun et al., 1999; Clark et al., 2004; Famy et al., 1998; Grant et al., 2005; Lemolne & Lemolne, 1992; Massey, 1997; Rutman et al., 2002; Streissguth et al., 1988; Streissguth et al., 1996, Streissguth et al., 2004). Lemolne and Lemolne (1992) were among the first to suggest that mental health problems may constitute one of the most severe manifestations of FASD In adulthood. 70 Recently, Grant et al. (2005) found that psychiatric Illness played a substantial role In the reduced quality of life among young adults with FASD. Although there have been no population-based studies, these results are supported by Famy et al. (1998) who found high levels of psychiatric illness In adults with FAS and FAE. Using Structural Clinical Interview DSM-IV for Axis I Disorders and DSM-II for Axis II Disorders they found that 92% of the participants had an Axis I diagnosis, and 48% an Axis II diagnosis. The most common Axis I disorders were alcohol or drug dependence (60%), depression (44%), and psychotic disorders (40%). The most common Axis II personality disorders were avoidant (29%), antisocial (19%), and dependent (14%). Self-report results revealed that 64% had received psychiatric treatment. In a second study of similar design, conducted two years later with the same sample, Chun et al. (1999) found that anxiety disorders had Increased, drug and alcohol dependence remained comparable, and psychotic disorders remained stable. Both studies Identified Individuals with more than one comorbid diagnosis. In addition to FASD. Two recent studies by Burd et al. (2003) and Grant et al. (2005) have corroborated these results. In a larger sample study Involving children and adults, Burd et al. (2003) found comorbid mental disorders In over 70% of their participants. High rates of neuropsychiatrie disorders were found to produce more Impairment that the few cases of birth defects noted (Burd et al.). Utilizing the Brief Symptom Inventory (BSI) Grant et al. (2005) found that over 55% of the participants had a threshold score that presumes psychiatric diagnosis, 78% reported having a psychiatric evaluation and 88% reported a family history of mental Illness. Data from descriptive and long-term studies Involving Interviews with caretakers reveal strikingly similar results (Clark, 2003; Streissguth et al., 2004; Streissguth et al., 1996). Results from these studies revealed levels of mental disorders In over 90% of 71 participants. The most common mental health problems noted were hyperactivity, depression and panic/anxiety disorders. In addition, suicide attempts and extreme difficulties with anger have been found to be problem areas for adults with FASD (Massey, 1997; Rutman et al., 2002; Streissguth & O'Malley, 2000; Streissguth et al., 1996). Although mental illness is commonly referred to as a secondary disability in the literature (e.g., Streissguth et al., 1996), composite results indicate at least some psychiatric disturbance is the direct result of damage to the structure and function of the brain (Burd et al., 2003; Dupuis & Urness, 2004; Lohr & Bracha, 1989; Riley et al., 2001; Striessguth & O'Malley, 2000). This, combined with social disadvantage and exposure to adverse environmental conditions, may explain why adults with FASD have higher levels of psychiatric symptomatology than other at-risk or intellectually disabled populations, such as Autism and Down Syndrome (Burd et al., 2003; Clark, 2003; Clark et al., 2004; Grant et al., 2005; Streissguth & O'Malley, 2000). It may also explain why Streissguth et al. (1996) found that early diagnosis of FASD was not a protective factor against mental health problems. It is likely that the interplay between primary insult and environment is the key to the alarming prevalence of mental illness in this population (Dupius & Urness, 2004; Streissguth & O'Malley, 2000). Thus, Streissguth and O'Malley (2000) argue "it is the understanding of the confluence of both biological and environmental factors that provide the best foundation for effective treatment" (p. 185). This suggests that effective clinical treatment plans need to consider both organic brain damage, and the impacts of the lived reality of those individuals with FASD. Given the alarming rates of mental illness in adults with FASD, the complete lack of studies on effective treatment is surprising. This is especially perplexing as results indicate the majority of adults with FASD have accessed mental health services and 72 undergone psychiatric evaluation (Clark, 2003; Grant et al., 2005; Massey, 1997; Streissguth et al., 1996; Streissguth et al., 1991). Clinical observations and neuropsychological results strongly suggest that standard mental health treatments are not effective for this population (Baumbach, 2002; Chun et al., 1999; Grant et al. 2004; LaBerge, 2004; LaDue et al., 1992; Lutke & Antrobus, 2004; Niccols, 1994; Malbln, 2002; Streissguth, 1994; Streissguth & O'Malley, 2000, Streissguth & O'Malley, 1997). Standard treatments may even be harmful, rather than therapeutic (LaBerge, 2004; Massey, 1997; Novick & Streissguth, 1996; Ory, 2004; Streissguth & O'Malley, 1997). The organic brain dysfunction resulting from prenatal alcohol exposure affects how individuals perceive and deal with their environment, regardless of what other psychiatric diagnoses they may have (Streissguth & O'Malley, 2000). In addition to possible neuropsychiatrie implications, it affects their ability to access services, recognize and predict crisis situations, understand and follow through with treatment and medication plans, and effectively communicate their needs (Copeland & Rutman, 1996; Grant et al., 2004; LaBerge, 2004; Lutke & Antrobus, 2004; Massey, 1997; Schmidt, 2005). It also affects their ability to link the past with the present or understand the passing of time; therefore, issues brought up from the past may feel as though they just happened (Ory, 2004). A lack of recognition of this subgroup of mental health patients who have FASD compromises the effectiveness of mental health services and has possible lethal consequences. Diagnosis, in combination with professional education and systemic recognition of the disability, is therefore recommended as a crucial first step to treatment. This includes the need to formalize FASD diagnosis within the psychiatric nomenclature, because dual diagnosis clearly has major implications for effective medical and/or behavioural interventions (Lutke & Antrobus, 2004; Streissguth & O'Malley, 2000). Clinical practice guidelines, including possible pharmalogical treatments, are indisputably needed. 73 The preceding review Illustrates a compelling need for holistic, coordinated and collaborative psychiatric and psychological services, crisis/emergency supports, and therapeutic counseling for adults with FASD. These are especially needed In those communities or neighbourhoods where a high, transgeneratlonal prevalence rate of prenatal alcohol exposure appears combined with high levels of substance abuse and social disadvantage (Streissguth & O'Malley, 2000). Given neurological Impairments Inherent In FASD, mental health treatments that are dependent on the affected adult for Implementation and follow through are not likely to be effective and may place the Individual at greater risk. As Streissguth and O'Malley (1997) summarize, "mental health professionals have an essential role In advocating for the needs of FAS or FAE Individuals who often do not have the capacity to advocate for themselves" (p. 3). Inappropriate sexual behaviour. Lived experience reports (Graefe, 2003; Klelnfeld et al., 2000; Lutke & Antrobus, 2004) and longitudinal studies (Clark et al., 2004; Streissguth et al., 1996) Indicate that after mental Illness, problems with Inappropriate sexual behavior constitute the next most prevalent barrier to optimal mental health In adults with FASD. Inappropriate sexual behaviour Is a particularly problematic clinical area for many adults with FASD as It can often lead to high rates of pregnancy. Increased risk of sexually transmitted diseases, and trouble with the law (Baumbach, 2002; Conry & Fast, 2000; Klelnfeld et al. 2000; LaDue et al., 1992; LaDue, 2002; Michaud & Michaud, 2003; Rutman et al., 2002; Streissguth et al., 2004; Streissguth et al., 1996; Streissguth et al., 1991). Inappropriate sexual behaviour In adults with FASD Is also an Issue that Is clearly problematic and stressful for families and caregivers (Klelnfeld et al., 2000; LaDue, 2002). Clark et al. (2004) and Streissguth et al. (1996) found Inappropriate sexual behaviour In over 45% of their participants. Repeated sexual advances. Inappropriate sexual touching, and promiscuity were the most prevalent concerns. Streissguth et al. 74 (1996) found that being a victim of violence increased the odds of sexually inappropriate behaviour four-fold. They found, as did Massey (1997) and Rutman et al. (2002), that female participants who displayed inappropriate sexual behaviours were more likely to have experienced sexual victimization and to have received therapy. Clark et al. (2004) found that the requirement for minimal to low level care was associated with lower rates of sexually inappropriate behaviour in their adult study. This supported the findings of Loser, Bierstedt and Blum (1999) who documented low rates of inappropriate sexual behavior in participants who had access to sheltered environments, as well as comprehensive education and programming. All of these results suggest that having an adequate nurturant living environment and supportive programming may be essential to increased positive outcomes for adults with FASD. Development of consistent habits as early as possible, as well as utilization of peer role models to assist with interpersonal skill development may assist with the reduction of inappropriate sexual behaviour (Kleinfeld et al., 2000; Trudeau, 2002). Given high rates of sexually inappropriate behaviour, it is important to recognize there are likely persons entering sexual treatment programs with undiagnosed FASD. There have been no studies to date on effective sexual deviancy treatment methods in this population. In the absence of researched interventions Baumbach (2002) sought to explore what implications neurological impairment may have on standard sexual deviancy treatments. He suggests that treatment which does not recognize the limited neurological capacity for memory, self-control, and self-monitoring, as well as the limited capacity for understanding sequence of thoughts, feeling, and events will result in frustration and failure. He recommends that treatments be realistic and pragmatic, focus on the present and the future, and involve careful assessment of factors that enhance or reduce the individual's capacity for self-control. Thorough diagnostic assessment of individual strengths and deficits, screening for possible auditory or visual impairments, 75 and possible use of medications combined with frequent réévaluation of effectiveness, were also recommended (Baumbach, 2002). Alcohol and drug use. In addition to psychiatric illness and inappropriate sexual behaviour, rates of alcohol and polydrug addictions have been found to increase during adulthood (Brownstone, 2005; Dubovsky, 1998; Grant et al., 2005; LaBerge, 2004; LaDue et al., 1992; Massey, 1997; Raymond & Belanger, 2000; Rutman et al., 2002; Streissguth et al., 1996, Streissguth et al. 1991). Baer et al. (2003) and Yates et al. (1998) found that prenatal alcohol exposure was significantly associated with drug and alcohol problems in young adults with FASD. These studies found the increased risk for alcohol and drug dependence persisted independent of other prenatal exposures and postnatal environments, including parental use of drugs or alcohol. Heavy episodic maternal drinking during pregnancy was found to approximately triple the odds that alcohol dependence would be displayed at 21 years of age (Baer et al., 2003). These results suggest a possible underlying biological preference or sensitivity to alcohol, as well as a possible genetic predisposition for alcoholism in this population. This predisposition combined with a notable vulnerability to adverse socio-environmental factors may explain the high rates of substance abuse seen. Streissguth et al. (1996) found alcohol and drug problems increased with adulthood. The strongest risk factor associated with alcohol and drug use in their study was living with alcohol or drug abusers. Late diagnosis and being the victim of violent behavior was also correlated with increased drug and alcohol use. They found over 40% of adults with FASD aged 21 to 51 had substance abuse issues. The results indicated alcohol use began approximately two years before drug use, and that 70% of those who had been in treatment for drug and alcohol problems had their first treatment before the age of 21. In addition, their results indicated men accessed treatment more readily than did women. They found that participants either had a notable substance abuse problem 76 or abstained from alcohol completely (Streissguth et al.). The lack of an alcohol or drug addiction was found to significantly decrease the likelihood of Involvement with the law. Appropriate levels of family or living support appeared to be the primary reason for abstaining from drinking (Streissguth et al.). These results again support the need for assisted living and Involvement with positive role models. They also suggest that research Into treatment barriers for women may need to be specifically considered. Adults with FASD often describe alcohol and drug use as a way of dealing with other problems such as untreated medical and mental Illnesses, poverty, loneliness, abuse, and loss (Massey, 1997; Rutman et al. 2002). Unfortunately, substance use Invariably makes problems worse, and low self-esteem and self-worth are commonly described (Massey, 1997; Rutman et al., 2002). Massey (1997) found that while the participants all had a history of drinking or drug use, they did not know how to stop or even why they should. Quitting was found to be difficult because of relationships with friends and family who continued to use. Individuals often Indicated they were not comfortable with most therapeutic approaches as they placed emphasis on communicative competence and group therapy formats (Massey, 1997; Rutman et al. 2002). Furthermore, accessing treatment often meant leaving their children and/or community (Rutman et al., 2002). Structured leisure, life skills, and educational programs were found to play a critical role in the ability to quit and maintain abstinence (Rutman et al., 2002). This suggests that structured and supported living arrangements and programs. In addition to thorough and assisted post-treatment services, may be effective for this population. Learning to communicate and/or express feelings may also be helpful. In the only study that has assessed alcohol and drug treatment, Streissguth et al. (1995) found destructive consequences resulted from treating a patient's secondary symptoms without recognition of the primary structural organic dysfunction. Insight- 77 oriented approaches which depend on individuai initiative were not successful. Intensive group sessions were found to overwhelm individuals and often triggered regression and decompensation (Streissguth et al., 1995). Extensive staff training on FASD in addition to modification of usual addiction treatment regimes was recommended. Other effective treatment recommendations included a therapeutic, individualized approach with an emphasis on current and future real-iife problems, and structured post-discharge arrangements. The involvement of family and the individual's support network in treatment plans and discharge plans, and the assignment of an advocate for ongoing support were also recommended (Streissguth et al.). This study emphasized that thorough diagnosis and assessment is a necessary platform to guide effective substance abuse treatment. Victimization. The final area that impacts mental health in adults with FASD is victimization. As indicated previously, adults with FASD are particularly vulnerable to manipulation which often results in the need for therapy. High rates of physical, sexual, and verbal abuse, as well as involvement in crime, are seen even if the affected adult is living with a supportive family or caregiver (Clark et ai., 2004). Clark et al. (2004) and Streissguth et ai. (1996) found evidence of exposure to violence and physical and sexual abuse in over 77% of their participants. Clark et al. (2004) also noted that 92% of the participants were described by their caregivers as being vulnerable to manipulation and suggested that this vulnerability may be linked with increased rates of secondary disabilities. These results are corroborated by findings noted in qualitative studies, clinical observations, and lived experiences (Brownstone, 2005; LaBerge, 2004; LaDue, 2002; Massey, 1997; Rutman et al., 2002). Evidence of social, sexual, and financial mistreatment and the apparent lack of control over their lives have also been documented (Clark et al., 2004; LaDue, 2002; Lutke, 1993; Massey, 1997; Rutman et 78 al., 2002; Schmidt, 2005; Streissguth et al., 1996; Streissguth et al., 1991). As Massey (1997) states many of the women had a: ... sense of powerlessness where each woman felt her life was in the control of forces larger and stronger than herself. She was buffeted by the relentless actions of others who never gave her time to make her own decisions. It was as if she was shouting into a wind so strong it carried her words away before they left her tongue. She could not hear herself speak and there was no quiet time for her to listen; the wind never stopped blowing. She learned to shout out her needs through her actions and the ones which caught my attention were the same ones which got her into trouble over and over again, (p. 119) Vulnerability is also compounded by the social isolation and profound loneliness that are often the constant companions of adults with FASD (Copeland, 2002). Adults describe the need for friends who accept them as they are, without demanding skills or behaviours they can not consistently produce (Berg et al., 1997; Massey, 1997; Rutman et al., 2002). The desire for meaningful friendships and a sense of belonging is a profound unmet need for many adults living with FASD (Copeland, 2002), and it is complicated by neurological difficulties with social and interpersonal skills (Streissguth et al., 1996). This results in individuals who have extensive difficulties maintaining long term relationships and thus are particularly vulnerable and easily led by 'friends'. Copeland (2002) found that the quest for friendship and acceptance placed young adults at risk. Interventions need to recognize that this desire for friendship and acceptance is a powerful motivator for adults with FASD, and may lead to either self empowerment or further victimization (Breen, 2000; LaDue, 2002; Raymond & Belanger, 2000; Schmidt, 2005; Schmucker, 1997). Raymond and Belanger (2000) found that perceived friendship had a noticeable positive or negative impact on how individuals perceived and participated in intervention strategies. They found participants would take the word or suggestion of someone they perceived to be their friend (including individuals they may have only known for a short period) over that of their caregivers (Raymond & Belanger, 79 2000). This resulted In either renewed participation or a sudden stopping of the recommended interventions. These results demonstrate the need for adults with FASD to be understood and respected, and the need for environments and expectations to change. They imply there is a critical need for available ongoing therapy that is based on relationships and focuses on the strengths and capabilities as well as challenges and barriers (Copeland, 2002; Massey, 1997). Therapy that recognizes and involves the individual, understands the neurological impairment as well as possible comorbid diagnoses, and, most importantly, recognizes the overall lived experiences and vulnerabilities of these adults (Copeland, 2002; Massey, 1997; Rutman et al., 2002). These results also support the need for the development of structured, appropriate leisure activities and life skills programming, in addition to the development of a network of positive mentors and other community supports (Lutke & Antrobus, 2004; Streissguth & O'Malley, 2000; Schmidt, 2005). Furthermore, these results illustrate the need to think holistically when designing interventions, and the importance of belief in individual capacity. Mental health intervention considerations. Psychiatric illness, inappropriate sexual behaviour, substance abuse, and a vulnerability to victimization lead to an acute need for mental health services that are integrated, holistic, and individualized. Grant et al. (2004), LaBerge (2004), and Raymond and Belanger (2000) found that advocacy, in combination with education of community mental health service providers, increased access to and improved treatment outcomes for adults with FASD. Although their studies did not analyze what alterations to mental health services or treatments proved to be the most effective, they did illustrate that third party interpretation and support combined with relationship-based, wrap-around care resulted in positive outcomes for adults with FASD. 80 Massey (1997) found that adults with FASD required a more individual, directive and structured therapeutic process. She reported that making a personal link with the client, establishing trust, and involving and informing the client in the process were essential to treatment success and the development of positive self-esteem. Ory (2004) suggests that punitive models and approaches may only serve to exacerbate situations for adults with FASD. He found criticizing or challenging adults with FASD to be counter productive and often had explosive results. Modeling calm and understanding, utilizing distractions, and ensuring expectations that are realistic were recommended. Ory (2004) reported that making life concrete through advocacy, narration, and illustrations maybe helpful. In addition, he argued that structuring environments for success and the slow building of consistent routines to be the most beneficial approach for therapy. Other results suggest that treatment options involving a practical, daily living approach designed to teach the patient to respond appropriately, make healthier choices, and avoid dangerous situations may be far more useful than insight therapy (LaDue et al., 1992; Novick & Streissguth, 1996; Streissguth & O'Malley, 1997). Treatments involving the creation of structured, caring living environments with clear expectations and appropriate work and leisure activities are suggested (Streissguth & O'Malley, 2000). The results indicate that the ability of the individual to sustain progress made in therapy depends heavily on the amount of post treatment support available (Conry & Fast, 2000; Novick & Striessguth, 1996). Therefore, it is recommended that at a minimum the significant people in the individual's life need to be aware of the behaviour rules or guidelines that the individual has learned in treatment so they can provide appropriate feedback and positive reinforcement (Novick & Streissguth, 1997). Furthermore, the results also suggest that the need for assisted access can not be underestimated, as Massey (1997) succinctly describes "the underlying issues were 81 never addressed because these women were incapable of keeping their appointments or even finding their way to an unfamiliar office" (p. 148). Although results indicate many adults have undergone psychiatric evaluation (e.g., Grant et al., 2005) this is likely in response to crisis situations. Therefore, the use of an advocacy and outreach model may be a particularly important adjunct to therapeutic regimes (Streissguth, 1997). Ministry and systemic recognition, eligibility requirements and policies also need to be considered to ensure adults with FASD are recognized and not excluded from needed services or treatments (Copeland & Rutman, 1996; Grant et al., 2004; LaBerge, 2004; Lutke & Antrobus, 2004; Raymond & Belanger, 2000; Rutman et al., 2002; Schmidt, 2005; Streissguth & O'Malley, 2000). Further study is clearly needed. Family support and involvement in treatment. Given the absence of adequate services for adults with FASD, it is recognized that families are often acting as the sole advocate or as Lutke (2003) states "mini-institutions" (Clark, 2003; Gibson, 2003; Graefe, 2003; Lutke & Antrobus, 2004; Raymond & Belanger, 2000). The lack of adequate "life-vests" of support and the traumatic outcomes that come at such a high cost to society, come at a higher cost to the families supporting adults with FASD (Coles, 2003; Lutke & Antrobus, 2004). Raymond and Belanger (2000) found the families were under noticeable to extreme levels of emotional stress and in evident need of respite and support. Financial stress is also a very real burden for many families who are currently having to purchase the services necessary to adequately support their adult children (Lutke, 2003). Currently it is often up to the family to advocate and educate professionals and the community at large (Graefe, 2003). Clark (2003) and Raymond and Belanger (2000) found that families were typically the only source of support for adults with FASD, and the degree and quality of help available to adults appeared to depend solely on their ability to advocate and educate service providers. These results combined with a lack of 82 professional FASD knowledge, an absence of available services after the age of adulthood, and the overwhelming challenges of FASD, suggest families are In acute need of respite and assistance. In addition to needed emotional and financial respite, Michaud and Michaud (2003) argue that families need a place where they can get Ideas, be heard, and be supported; thus support networks and access to family advocacy may be beneficial. In addition to stress, another factor that has consistently been noted In families supporting Individuals with FASD Is grief (Michaud & Michaud, 2003). There is an Imperative need to recognize the wisdom inherent In these supportive family structures and experiences. Their observations and Insights provide a solid foundation for Intervention Ideas and directions for further research (e.g., Gibson, 2003; Graefe, 2003; Klelnfeld et al., 2000; Lutke & Antrobus, 2004). Their experiences can guide solid policy development, and provide direction as to how to support the majority of adults with FASD who are without any family or caregiver support. Physical Health As cognitive impacts have been found to Impair optimal functioning In adults with FASD to a greater degree than other physical deficits (Streissguth, 1997; Burd et al., 2003) very little research In this area was located. Studies have primarily focused on whether or how physical outcomes relate to diagnosis and/or neuropsychological outcomes (e.g., Clark et al., 2004; Connor et al., 2000; Kodituwakku et al., 2001, Streissguth et al., 1988; Streissguth et al., 1978). However, the literature does reveal some critical physical health Issues that need to be considered when designing Interventions to optimize outcomes for adults with FASD (Berg et al., 1997; Connor et al., 2005; Connor et al., 1999; Church, Eldis, Blakely & Bawle, 1997; Graefe, 2003; Grant et al., 2004; LaBerge, 2004; LaDue, 2002; LaDue et al., 1999; Streissguth, 1997; Streissguth et al., 1988; Trudeau, 2002). 83 Physical health Implications. Cardiac, skeletal, dental, renal, ocular, and auditory anomalies have all been found to compromise the physical health of adults with FASD. Streissguth et al. (1988) were among the first to summarize the variable dental, visual, skeletal, and cardiac problems seen in adults with FASD. More recently. Church et al. (1997) found hearing deficiencies occurred in 77% of their participants resulting in significant central, conductive, and sensorineural hearing loss. For those tested for central hearing function, 100% were significantly impaired. In addition, they found that serious, recurrent otitis media often persisted into adulthood (Church et al.). High incidences of dentofacial, joint, ocular, cardiac, and skeletal disorders were also observed. Stratton et al. (1996) indicated similar results and suggest that possible urogenital and renal disorders should also be considered; whereas Burd et al. (2003) found that in addition to cardiac conditions, seizure issues may be present. Although there has been very limited research and physical outcomes clearly vary between individuals, results suggest that hearing, vision, and dental anomalies may be among the most frequent of the above-noted deficits seen in adults with FASD (Church et al., 1997). LaDue et al. (1999) suggest that this may be due to the fact that auditory, ocular, vestibular, craniofacial, and CNS systems are tied together embryonically, anatomically, and functionally. Deficits in hearing and vision may explain some of the intense sensory difficulties and slow information processing noted in adults with FASD, and as they can contribute to language, learning, and behavioural difficulties they warrant early and aggressive intervention (Baumbach, 2002; Church et al.). Regular screening and assessment in combination with appropriate dental, auditory, ocular, and speech/language services may be required. Cardiac, joint, and skeletal impairments imply that occupational and physical therapy assessments may also be helpful (DeVos, 2003). In addition to improving 84 independent function, they may also be important considerations for employment placement and/or vocational training. Chronic medical iiiness. In addition to possible birth defect complications, Grant et al. (2004), LaBerge (2004), and Massey (1997) all noted high rates of serious chronic diseases such as: asthma, cancer, AIDS, tuberculosis, and hepatitis. For example. Grant et al. (2004) found that 47% of their sample displayed serious chronic medical problems such as seizure disorders or kidney failure. This indicates that management of chronic illness may be another area that must be considered for optimal functioning. Exposure to adverse environmental conditions, difficulties following through with medical treatments, and lack of appropriate nutrition are areas that may need particular attention, in addition to accessing consistent and informed medical care. Although the causative factors of these physical outcomes remain unstudied, the impact on optimal functioning and intervention design should not be minimized. It appears likely that adequate assessment of physical factors is needed to design appropriate interventions and supports (Baumbach, 2002). Unplanned pregnancy and sexually transmitted diseases. As noted in the inappropriate sexual behaviour section, a final area of medical health that appears to be particularly problematic for adults with FASD is increased risk of sexually transmitted disease and unplanned pregnancy (Abraham, 2005; Dorris, 1989; LaBerge, 2004; LaDue, 2002; LaDue et al., 1992; Lutke, 1993; Massey, 1997; Porter et al., 1997; Rice, 1992; Streissguth, 1997; Trudeau, 2002). Results indicate that many adults with FASD find themselves parents, dealing with multiple pregnancies, and/or dealing with sexually transmitted disease. Professional education in combination with advocacy and outreach models have been found to increase access to regular birth control and support for family planning decisions (Grant et al., 1997; Grant et al., 2004; LaBerge, 2004; Rutman et al., 2005). Grant et al., (2004) and LaBerge (2004) reported that access to and follow- 85 through with effective birth control plans only occurred as a result of direct advocate support and utilization of methods not dependent on intact daily memory. However, effective methods for preventing sexually transmitted disease remain unstudied. Lived experience reports suggest that explicit and repetitive teaching of rules to guide present and future sexual behaviour may be beneficial (Kleinfeld et al., 2000; Trudeau, 2002). Encouraging and facilitating safe friendships and relationships cannot be overstated (Copeland, 2002). Teaching how to choose appropriate partners and utilization of a friendship checklist may be helpful (LaDue, 2002; Schmidt, 2005). Furthermore, Porter et al. (1997) found protective factors included the provision of safe, stable and supportive living environments in combination with early diagnosis and a lack of exposure to violence. Lived experience and program reports illustrate that many adults with FASD are living high risk and marginalized lifestyles (Abraham, 2005; Copeland, 2002; Dorris, 1989, Grant et al., 2004; Kleinfeld et al., 2000; LaBerge, 2004; Lutke, 2003; Massey, 1997; Michaud & Michaud, 2003; Rutman et al., 2002; Rutman et al., 2005; Streissguth & Kanter, 1997; Schmidt, 2005). This increases the risks of exposure to sexually transmitted diseases (such as HIV) and repeated pregnancy, which clearly have grave prevention and intervention implications. Increased risk of repeated pregnancy and/or sexually transmitted diseases is an area with unacceptable costs for individuals, their families and future generations. Moreover, these risks are likely to continue to grow until it is recognized at the professional and system level that expecting the individual to change or adapt without support is not the solution. Traditional educational and public health methods are often ineffectual and do not factor in lived reality or cognitive abilities; nor do they factor in possible multigenerational FASD impact (LaBerge, 2004). Until professional knowledge increases and systems/supports change, the increased risk 86 of multiple pregnancies and/or sexually transmitted disease will likely remain an acute, and tragic, public fiealth issue. Motor skills. In addition to the above-noted physical deficits, difficulties with fine and gross motor skills have also been noted. Connor, Sampson, Streissguth, Bookstein and Barr (2005) recently published the first study on gross and fine neuromotor skills in adults with FASD which corroborated preliminary results noted by Bookstein et al. (2002). This controlled adult study found 75% of the participants demonstrated deficits in motor function, especially in areas of balance, fine motor coordination, and control. Interestingly these preliminary results indicate that deficits persisted into adulthood only for those individuals highly exposed to alcohol and who demonstrated other accompanying neurological effects, thus, suggesting possible neural underpinnings resulting from damage to the cerebellum and/or corpus callosum (Connor et al., 2005; Bookstein et al. 2002). The study found that although motor deficits were not relevant to diagnosis, assessment may be useful in facilitating appropriate employment and training programs and in the development of possible ameliorative treatments (Connor et al.). Sensory deficits. Sensory deficits are another area commonly noted In the literature and should be considered when developing interventions (e.g., Dupius & Urness, 2004; Lyons, 2004). Observations indicate that adults often find it difficult to deal with multiple sensory inputs resulting in increased agitation and attention difficulties, in addition to information processing defects (Bookstein et al., 2002; Brock, 2000; Kerns et al., 1996; Kleinfeld et al., 2000; Lyons, 2004; Malbln, 2002; Rutman et al., 2002; Schmidt, 2005: Stratton et al., 1996; Trudeau, 2002). Sensitivity to emotion, sound, vision, smells, and touch have all been noted and modifications to environments and provisions for calming, and non-punitive time-outs are often recommended for optimal function (Lyons, 2004; Malbin, 2002; Schmidt, 2005). This includes: limiting auditory and visual stimulation, providing opportunity for appropriate physical activities, keeping 87 requirements for concentration realistic, providing appropriate tactile activity, and utilizing routine calming tecfiniques (Graefe, 2003; Lyons, 2004; Schmidt, 2005; Trudeau, 2002). Teaching concrete strategies to assist with, and recognize signs of overload, including the ability to self-recognize potentially problematic environments, may also be helpful (Graefe, 2003; Kleinfeld et al., 2000; Lyons, 2003; Schmidt, 2005; Trudeau, 2002). Alarmingly, it has also been noted that some adults are unable to accurately recognize or communicate when they are sick or in pain (Berg et al., 1997; Clark, 2003; Lutke & Antrobus, 2004; Schmidt, 2005). The results indicate that having an advocate who knows the individual well and is able to assist with communication and recognition of possible problems may be indispensable in this case (Schmidt, 2005; Streissguth, 1997). In addition, having a consistent, long term relationship with a physician who understands the client and FASD would also be beneficial (Clark, 2003). Results indicate, however, this type of consistent relationship with medical services is rare for most individuals with FASD who do not have advocates (Grant et al., 2004; LaBerge, 2004; Massey, 1997). As Clark (2003) notes, " a physician who is unfamiliar with a patient who has FASD or is unfamiliar with FASD itself may not take the time required to determine if there are any other health issues the patient has but is not articulating" (p 98). Despite wide reference to sensory integration defects in this population, this review was only able to locate observational information. No specific studies describing sensory integration deficits in adults with FASD were iocated. The consistency of this finding, however, in evidence-based practice suggests that neurosensory deficits may have major implications for treatment and intervention strategies (Abraham, 2005; Brownstone, 2005; Copeland & Rutman, 1996; Dorris, 1989; Dubenski, 1997; Dupius & Urness, 2004; Dyer et al.,1997; FAS/E Support Network, 1990; Gibson, 2003; Graefe, 2003; Grant et al., 2004; Griesbach & Polloway, 1990; Kacki, 2004; Kleinfeld et al.. 88 2000; LaDue, 2002; Lutke, 1993; Lutke & Antrobus, 2004; Laporte, McKee, Lisakowski, Chudiey & Conry, 2002; Lyons, 2004; Malbin, 2002; Michaud & Michaud, 2003; Options for Independence, 2003; Raymond & Belanger, 2000; Schmidt, 2005; Schmucker, 1997; Stratton et al., 1996; Streissguth, 1997; Trudeau, 2002). Assessment of sensory integration and provision of remedial interventions are recommended, as is further research in this area. Medical service suggestions. Access to regular, integrated, and informed medical care is undoubtedly needed for adults with FASD. However, Grant et al. (2004), LaBerge (2004), and Massey (1997) found that that many of their participants did not have a regular General Practioner and many individuals had not been seen by a health care professional for quite some time. They found that adults were often unable to independently access services or follow through with treatment plans, including taking needed medications (Grant et al., 2004; LaBerge, 2004; Raymond & Belanger, 2000). Difficulties in understanding information and communicating medical needs were also noted. Grant et al. (2004) and LaBerge (2004) found that advocacy and professional education improved medical access and outcomes for their adult participants. Assistance with interpretation and communication, including advocating for consistency in service providers, were noted to be effective in improving services. Community capacity development plus access to FASD consultation were also seen to be essential components of effective community service delivery (Grant et al., 2004: LaBerge, 2004; Raymond & Belanger, 2000). In addition to difficulties in taking medications, another area in critical need of study is the actual impact of medications on adults with FASD. Currently, there have been no studies on the effects of medication on adults with FASD despite evidence of neurostructural and neurochemical CNS damage. Clinical and observational evidence 89 indicates that adults with FASD may not react to medication in expected ways (Baumbach, 2002; Kleinfeld et al., 2000; O'Malley, 2000; Streissguth & O'Malley, 2000). Thus, careful evaluation and consistent re-evaluation of medication treatments should be considered. Further research is needed. Overall, the results suggest that effective medical services need to understand the lives of adults with FASD, the pervasiveness of the teratogenic insult, and the resulting difficulties with access to services, cognition, and communication. As access to regular medical care is currently unlikely to exist (LaBerge, 2004), it is essential that medical professionals realize that adults without advocate support may have no consistency in terms of medical treatment. In larger centres, these adults are likely to access drop-in type services in a variety of medical domains (Massey, 1997), and in rural areas where drop-in services are not available they may often remain without care until crisis situations are reached. Diagnosis and assessment. A final yet vital component to medical services for adults with FASD is the provision of diagnosis and assessment of FASD itself. Streissguth (1997) summarizes that "diagnostic evaluation is the starting point for understanding, treating, and managing any medical condition" (p. 6). It is critical to the development of realistic expectations and to the understanding of what is often puzzling behaviour (Baumbach, 2002; Streissguth, 1997). The results indicate that it does not carry with it an inevitable negative sentence. Rather, reports indicate diagnosis frequently provides adults with a sense of relief and assists them in understanding themselves and why they may be different (Berg et al., 1997; Rutman et al., 2002). Diagnosis provides possible causes for previously inexplicable behaviours and motivates attempts to find appropriate treatments and interventions rather than blaming the individual when standard approaches are not effective (Baumbach, 2002). Furthermore, it is central to the approach of "trying differently, not harder" (Malbin, 2002) which is now 90 a tenet for working effectively with Individuals affected by FASD. It Is, however, Imperative and many argue ethical (e.g., LaBerge, 2004), that diagnosis and assessment be linked with available resources and services. Although, recommendations for adult diagnosis are clearly beyond the mandate of this study, the literature does reveal a few themes that are worth noting. First, recent results confirm that IQ and variable facial dysmorphology do not effectively characterize the Impact of alcohol on Individuals with prenatal alcohol exposure (Bookstein et al. 2002; Connor et al., 2000; Dyer et al., 1997; Kodituwakku et al. 2001). This suggests that although facial dysmorphology was critical to the recognition of this disability, differing diagnoses based on this Indicator may not be meaningful. Thus, studies appear to be shifting away from studying adult facial diagnostic criteria to examine other criteria more specific to the brain with a particular focus on frontal lobe damage (e.g., Bookstein et al., 2002 ). Another trend Is the movement towards a multldlsclpllnary-team approach to diagnosis as outlined by the Canadian model (Chudiey et al., 2005). This appears to result from a shift to a more functional focus that recognizes the pervasiveness of alcohol's teratogenic Insult Including physical, cognitive, and behavioral Impacts. These findings suggest measures of adaptive function should also be considered fundamental to assessment and the determination of appropriate support needs for adults with FASD (Clark et al., 2004; Raymond & Belanger, 2000; Russell, 2002). Observations In a variety of different environments appear to be another vital component to assessment. They provide useful Information regarding the Inter-relatlonship between environmental and behavioural characteristics that may otherwise be missed (Baxter, 2005; Brock, 2000; Dyer et al., 1997). Finally, cultural considerations or perspectives In terms of assessment and testing may also need to be considered (Hart, 1997; Maguire, 2004; MassottI et al., 2003; Mitten, 2003). 91 The final theme that appears in the literature is that formal diagnosis should not be considered a prerequisite for intervention services. As LaBerge (2004) summarized, "the vast majority of adults affected by FASD do not have a diagnosis and requiring one would exclude many of the people for whom the project aims to support" (p. 40). This does not suggest that formal diagnosis or assessment is not needed; rather, it is based in the practical reality that access to diagnosis may not exist for the majority of adults with FASD. It does, however, raise difficult and unanswered questions surrounding the screening and assessment of symptoms and indicators consistent to FASD, and it also poses very difficult ethical questions. Many different screening tools based on the empirically-known characteristics of FASD combined with historical data are reported as being utilized; however, no screening tool with known sensitivity, specificity, reliability, and viability is currently available (Boland, Chudiey & Grant, 2002). Interpersonal Skills Adults with FASD often have difficulties with interpersonal skills or social competencies despite a strong interest in social interactions. As indicated in previous sections, these deficits in social functioning and the resulting difficulties in maintaining successful relationships or friendships poses a significant challenge to adults with FASD (Clark, 2003; Copeland, 2002; Copeland & Rutman, 1996; Conry & Fast, 2000; Dyer et al., 1997; Dupius & Urness, 2004; FAS/E Support Network, 1995; Kelly, Day & Streissguth, 2000; LaDue, 2002; LaDue, 1993; LaDue et al., 1999; Malbin, 2002; Massey, 1997; Raymond & Belanger, 2000; Schmidt, 2005; Schmucker, 1997; Stratton et al., 1996; Streissguth et al., 1988; Streissguth, 1997; Streissguth, 1993; Trudeau, 2002). As Baxter (2005) indicates, the difficulty functioning in a social setting, "appears to have the most far reaching effects (although often subtle) for these individuals, and is the hardest to describe, pinpoint or quantify" (p. 5). Difficulties with interpersonal skills may stem from early attachment issues, atypical development, adverse environmental 92 conditions, and ineffective use of social communication (Kelly et al., 2000). However, research suggests deficits in the social domain may also be the result of alcohol-induced alterations in brain structure resulting in linguistic difficulties, poor communication skills, and executive functioning deficits (Baxter, 2005; Kelly et al., 2000; Monnot, Lavallo, Nixon & Ross, 2002; Streissguth et al., 1988; Streissguth et al., 1991). As Kelly et al. (2000) indicate, "there is enough evidence to indicate th a t... another very common and important indicator of CMS dysfunction in FAS is problems in the social domain" (p. 147). Social skill deficits. Studies have shown that deficits in social function increase and become significant with age, making socialization a particular problem area for adults with FASD (Stratton et al., 1996). Difficulties in social behaviour are likely to impair work performance and the ability to live independently. Awkward social behaviour can also result in a lack of social support which is known to influence rates of depression as well as involvement in criminal behaviour (Kelly et al., 2000). Streissguth et al. (1991) were among the first to document deficits in socialization behaviour. Utilizing the Vineland Adaptive Behavioral Scale (VABS), they found adults with FASD failed to consider the consequences of actions, were unresponsive to social cues, lacked reciprocal friendships, and had difficulty cooperating with peers. They found that adults with IQ scores above 70 still exhibited significant problems in the social domain. Similar results by others (Clark , 2003; Dyer et al., 1997; LaDue, 1993; Raymond & Belanger, 2000; Russell, 2002; Streissguth et al., 1996) have corroborated these initial results indicating that adults with FASD may have difficulties integrating with society and appreciating social norms. The cause of these social deficits has not been thoroughly studied. A preliminary lifespan study by Kelly et al. (2000) suggests that fundamental changes to the basic building blocks of social behaviour may result from alcohol insult rather than abnormal environments. 93 In order to expand socialization ability, the literature often recommends the direct teaching of social skills. Opportunities to practice skills in as many present and future contexts as possible are recommended (Burgess & Streissguth, 1992; LaDue et al., 1999; Trudeau, 2002). Role playing and priming, which involves the practicing of important behaviours for an activity prior to its occurrence, may be useful (LaDue et al., 1999; Schmidt, 2005; Trudeau, 2002). Peer mentoring and the provision of an advocate to assist with translating and understanding social behaviour are suggested (Streissguth, 1997; Kleinfeld et al., 2000). In addition, the literature recommends providing a supervised environment where individuals can socialize with some success (Clark, 2003; Conry & Fast, 2000; Grant et al., 2004; LaDue, 1993; Lutke, 1993; Options for Independence, 2003; Raymond & Belanger, 2000; Streissguth et al., 1988; Trudeau, 2002 ). LaDue et al. (1999) argue that difficulty with interpersonal relationships and social skills inhibits function especially in the area of employment. They recommend direct teaching of: (a) how to negotiate to get what you need; (b) how to disagree with someone in an appropriate way; (c) how to show someone you like them in an appropriate way; (d) how to accept criticism or negative feedback; (e) how to get someone's attention in a positive way; (f) how to give and take a compliment; (g) how to start a conversation; (h) how to say no to peer pressure; and (i) what to do when you feel scared or confused. Schmidt (2005) adds to this list and recommends teaching how to ignore someone who is bothering you and how to say no appropriately. It is evident that age and physical growth exceeds social maturation in adults with FASD (Burd et al., 2003; DeVos, 2003, LaDue, 1993; Malbin, 2002; Stratton et al., 1996; Streissguth et al., 1991; Streissguth, 1993). Thus another important foundation to intervention is to "think younger" and/or assess possible dysmaturity (Malbin, 2002). 94 Communication skills. Communication skills which include language, verbal, gestural and behavioural skills are integral to effective socialization and the ability to live within a community. Studies have found that although there is no consistent language profile, the use of language for social communication is difficult for individuals with FASD (Abkarian, 1992; Baxter, 2005; FAS/E Support Network, 1995; Grant et al., 2004; LaDue et ai., 1999; Lutke & Antrobus, 2004; Massey, 1997; Niccols, 1994; Schmidt, 2005; Woodworth, 2005). The literature indicates that superficial fluency may mask underlying deficits in language and comprehension (Baxter, 2005; Grant et al., 2004; LaDue; 2002; Lutke & Antrobus, 2004; Schmidt, 2005). Stronger expressive language than receptive language and deficits in functional language abilities have also been noted (Abkarian, 1992; Baxter, 2005). The capacity for verbal output may exceed the ability to process verbal output (LaDue et al., 1999). In addition, recent results suggest particular difficulties with connected language (Baxter, 2005; Woodworth, 2005; Russell, 2002). These preliminary results suggest full speech and language assessment including observations of communication with others are integral to designing effective supports and interventions. The inability to recognize non-verbal cues is another area often compromised in adults with FASD (Dupius & Urness, 2004; Streissguth et al., 1991). Monnot et al. (2002) studied FASD adults' ability to perceive non-verbal cues and found pronounced deficits in affective prosody but not the verbal linguistic aspects of communication. Affective prosody is the nonlinguistic aspect of language that conveys emotions and attitudes during discourse. Given that affective prosodic content takes precedence over the linguistic message, the ability to modulate affective prosody is an essential element of face-to-face communication. Their results suggest that deficits in this ability may significantly compromise interpersonal discourse abilities (Monnot et al.). Furthermore, Monnot et al. found these specific impairments may be a consequence of both callosal 95 and right cortical dysfunction and damage. These results may explain the tendency for adults with FASD to translate information literally and highlight the need to communicate with them in concrete and precise terms (Grant et al., 2004). Central hearing loss, auditory processing delays, and other sensory impairments are other areas that may negatively influence communication and comprehension (Church et al., 1997; Malbin, 2002). As mentioned earlier, deficits in these areas may lead to increased speech and language pathology and may explain some of the difficulties experienced when verbal language is used as the primary means of communication. These results illustrate the importance of identifying sensory impairments before designing interventions. In addition, they suggest that the reduction of competing stimuli, speaking slowly and allowing time for processing may improve communication. Repeating and rephrasing information are also recommended, as is the utilization of a clear, calm voice in normal speaking tones (Conry & Fast, 2000; Ory, 2004; Schmidt, 2005). Overall the results of these studies imply that CNS damage plays a significant role in social communication deficits found in adults with FASD (Stratton et al., 1996). This has lead to the foundational intervention premise reflected in much of the literature, which calls for reframing behaviours in light of the underlying cause (CNS dysfunction) versus the symptom (e.g., Malbin, 2002; Streissguth, 1997). It also provides the rationale behind the consideration that inappropriate or challenging behaviour may be a form of communication. Therefore, searching for the underlying cause of behaviour through observation and understanding of potential influential environmental factors may be useful in determining intervention approaches. To assist adults with communicative comprehension, the following considerations, recently outlined by Grant et al. (2004), may be useful. Given the tendency to interpret information in a very literal manner, one should communicate in 96 very concrete terms, avoid words with double meanings and idioms, and say exactly what you mean. Understanding may be ensured by providing simple step-by-step instructions and by asking for demonstration of understanding rather than relying on verbal affirmation. Utilization of simple written instructions and illustrations, as well as re­ teaching and repeating of important points are recommended. Finally, consistency in the environment, provision of visual cues and transparent planning for transitions may also have beneficial results. Clarity and the positive framing of expectations are other suggestions that may be useful in guiding positive behaviours and social comprehension (Schmidt, 2005; Trudeau, 2002). The results currently indicate that deficits in social abilities impair optimal functioning in adults with FASD. Poor comprehension of social expectations and impaired social judgment, combined with the appearance of competence, places adults with FASD at acute risk of social isolation. Inappropriate behaviours may often be seen as intentional (Schmidt, 2005). Furthermore, difficulties with interpersonal skills combined with often adverse lived experiences create an almost desperate need for friendship and belonging (Copeland, 2002; Copeland & Rutman, 1996; Massey, 1997; Schmucker, 1997). This often results in victimization and increased maladaptive behaviours, thus iliustrating the profound need for the development of pro-social activities and pro-social living skills for this population. Lived Experience In addition to teratogenic effects, environmental influences, and lived experience also have a direct impact on functioning for adults with FASD (Clark et al., 2004; Streissguth et al., 2004). This fact cannot be overstated as many adults with FASD have difficult life experiences. The consideration of lived experience and environmental influences is essential to fully understanding the origin of behaviours and the multifaceted challenges facing adults with FASD, and it provides context to a disorder 97 that affects all realms of life (Breen, 2000; Boland et al., 2002; Brownstone, 2005; Clark, 2003; Clark et al., 2004; Conry & Fast, 2000; Copeland & Rutman, 1996; Dyer et al., 1997; Grant et al., 2004; Kleinfeld et al., 2000; Kyffin, Richmond & Yakel, 2005; LaBerge, 2004; Lutke & Antrobus, 2004; Malbin, 2002; Maguire, 2004; Massey, 1997; Michaud & Michaud, 2003; National Homelessness Initiative, 2003; Ontario Federation of Indian Friendship Centres, 2002; Options for Independence, 2000; Raymond & Belanger, 2000; Rutman et al., 2005, Rutman et al., 2002; Schmidt, 2005; Streissguth et al., 2004). As Streissguth and O'Malley (2000) surmise: Patients with FASD function best in settings where life is predictable and structured, expectations are clear and reasonable, they are treated with respect and understanding, and they have appropriate role models. This is hardly surprising. What is surprising is the number of ways this normalseeming scenario can go awry. (p. 185) As this quote implies, it is essential that interventions and supports consider the lived experience and environmental influences effecting optimal functioning in adults with FASD. Life histories and quality o f life. Descriptive and longitudinal studies have documented a prevalence of adverse and difficult life experiences affecting adults with FASD. Streissguth et al. (1991) were among the first to study the adult demographics of this population. They found 78% of participants had no contact with either biological parent and 69% of their biological mothers were dead. Extreme home instability combined with high levels of unplanned pregnancy, trouble with the law, substance abuse, mental illness, victimization, and issues of loss were also noted. Further studies and reports (Copeland & Rutman, 1996; Clark, 2003; Clark et al., 2004; Dubovsky, 1998; Grant et al., 2005; Massey, 1997; Porter et al., 1997; Rutman et al., 2002; Streissguth et al., 1996; Up North Training Services, 2002) have corroborated and expanded these results, suggesting that the majority of adults with FASD are vulnerable and likely to be 98 dealing with multiple concurrent difficult life situations alone and without adequate healthy role models or support. Two studies on the quality of life for adults with FASD were found. Clark (2003) studied quality of life by assessing community integration and independence for adults with FASD (n=62). Utilizing the Acculturation, Integration, Marginalization, and Segregation (AIMS) standardized interview and functional assessment, her results indicated that community integration and independence were poor. Assessment of integration in a variety of domains revealed high levels of marginalization. Integration into medical, dental and housing services were the most common. However, results indicate this integration was highly dependent on living with a caregiver (Clark). The results also indicated that despite the study requirement of having a caregiver, very few clients were able to live independently (13%), and there were almost no resources available to assist them with achieving interdependent living in the community. Furthermore, this study revealed 92% of the participants were vulnerable to manipulation and 87% had experienced verbal, physical, and sexual abuse. Grant et al. (2005) also recently assessed quality of life in an adult sample (n=11) utilizing the World Health Organization Quality of Life assessment (WHOQOL-BREF). Their results showed that the FASD participants scored lower in all domains (physical health, psychological, social, and environmental) than did the healthy standardized sample. High levels of social disadvantage, in addition to teratogenic effects, were found to contribute to poor life quality. Only 27% were found to have lived with their biological family and more than half lived in extremely unstable housing. Government assistance was the main source of income. Furthermore, they found a 'cascade' of difficult life circumstances, resulting from experiencing adulthood without needed supports, surrounded the adults in their study (Grant et al.). 99 It is, however, the stories of the lived experiences of adults with FASD that provide the most interconnected and contextual understanding of this disorder, and it is this level of understanding that may have the greatest impact on effective service provision. Dorris (1989) was the first to write about the lived experience of an adult with FAS. His narrative of life with his adopted son provided a human context to the disorder. Dorris wrote of the impacts resulting from a lifetime of struggle to meet unrealistic expectations. He spoke of potentially devastating outcomes associated with acute need and vulnerability, combined with lack of understanding, awareness, and adequate services. His words illustrated the interconnection between lived experiences and the cognitive impacts resulting from prenatal alcohol exposure. Their story marked the beginning of a multifaceted understanding of this disorder, and illustrated for the first time the sheer magnitude and diversity of challenges facing adults with FASD (Dorris, 1989). Furthermore, their story illustrated the futility of taking a fragmented, depersonalized, and disassociated approach to interventions and support. It documented the potential wealth and viability of knowledge held by the family or support network. Others have also documented the lived experiences of adults with FASD through narratives, shared experiences, videos, and qualitative studies (Berg et al., 1997; Copeland & Rutman, 1996; Graefe, 2003; Kleinfeld et al., 2000; Kyffin et al., 2005; Lutke & Antrobus, 2004; Malbin, 2002; Massey, 1997; Michaud & Michaud, 2003; Rutman et al., 2005; Rutman et al., 2002; Trudeau, 2002). These results illustrate both the individuality and pervasiveness of the disorder, as well as the strengths, successes, challenges, and contradictions facing adults with FASD. Furthermore, they document the integrated impact of FASD on daily life, as well as educational, employment, health, social, and justice systems (Copeland & Rutman, 1996; Rutman et al., 2002; Rutman et al., 2005). These results suggest lived experiences have a direct impact on the efficacy 100 of interventions, wtiich may be missed if a strictly cognitive treatment approach is taken. These results imply that the lack of an integrated and individualized approach often results in disjointed service provision, which may further exacerbate dysfunction. Overall, the composite literature indicates that adults with FASD are often faced with unmet basic physical, mental, and emotional needs, and are likely involved with multiple disassociated agencies (Abraham, 2005; Berg et al., 1997; Brownstone, 2005; Clark, 2003; Clark et al., 2004; Copeland, 2002; Copeland & Rutman, 1996; Coles, 2003; Conry & Fast, 2000; DeVos, 2003; Dorris, 1989; Dubenski, 1997; Dubovsky, 1998; Dupius & Urness, 2004; Graefe, 2003; Grant et ai., 2004; Grant et ai., 2005; Health Canada, 2003; Hume, Rutman, Hubberstey & MacFeeters, 2005; Kacki, 2004; Kleinfeld et al., 2000; Kyffin et al., 2005; LaBerge, 2004; LaDue, 2002; LaPorte et al., 2002; Lutke & Antrobus, 2004; National Homelessness Initiative, 2003; Malbin, 2002; Massey, 1997; Michaud & Michaud, 2003; Mitten, 2003; Ontario Federation of indian Friendship Centres, 2002; Options for Independence, 2003; Porter et al., 1997; Raymond & Belanger, 2000; Roberts & Nanson, 2000; Rutman et al., 2005; Rutman et al., 2002; Schmidt, 2005, Stratton et al., 1996; Streissguth et al., 2004; Streissguth et al., 1996; Streissguth et al., 1991; Trudeau, 2002; Up North Training Services, 2002). In addition, many face poverty, homelessness, transience, and social isolation. Incarceration, unemployment, abuse, addictions, as well as loss of family and culture are also common. The literature also indicates that marginalization of adults with FASD may be perpetuated as they and their families rarely have an active voice in the services or supports provided for them (Dupius & Urness, 2004; Gibson, 2003; Kleinfeld et al., 2000; Lukte & Antrobus, 2004; Massey, 1997; Rutman et al., 2005; Rutman et al., 2002; Schmidt, 2005). Due to the lack of successful community integration, supportive policies, and services, adults are often unable to care for themselves or their children (Abraham, 101 2005; Rutman et al., 2005; Porter et al., 1997). They are at extreme risk of repetitive rejection and failure, and of prenataiiy exposing their own children to alcohol (Porter et al., 1997). Experiences of frustrations and failures within health, education, justice, and social systems are common (Breen, 2000; Conry & Fast, 2000; Grant et al., 2004; LaBerge, 2004; Lutke & Antrobus, 2004; Raymond & Belanger, 2000; Schmidt, 2005; Streissguth, 1997). Despite difficult challenges, studies indicate many adults with FASD remain optimistic, display quiet strengths and a determination to secure stable and productive lives (Breen, 2000; Berg et al., 1997; Brownstone, 2005; Massey, 1997; Rutman et al., 2002; Schmidt, 2005; Up North Training Services, 2000). However, these results imply that it is unlikely short term programming and supports will be enough to stem the tide of harm that has been incurred for some individuals (Michaud & Michaud, 2003). The findings of this literature review indicate that the majority of adults with FASD are currently being asked to fit into the community and meet the expectations of adulthood without adequate services or supports (Brownstone, 2005; Clark, 2003; Conry & Fast, 2000; Grant et al., 2004; Kyffin et al., 2005; LaBerge, 2004; LaDue, 2002; Lutke & Antrobus, 2004; Raymond & Belanger, 2000; Schmidt, 2005; Streissguth et al., 2004). These research results suggest that the majority of adults with FASD do not have personal support networks (Breen, 2000; Clark, 2003; Copeland, 2002; Conry & Fast, 2000; Hume et al., 2005; Schmidt, 2005). Even for those adults with active family or other support networks, adulthood represents a crisis point (Kleinfeld et al., 2000; Lutke & Antrobus, 2004). Kleinfeld et al. (2000) summarize that as biological and cultural demands escalate "strategies that worked for younger children are no longer enough ... as a result we do not often see happy endings when we follow these adolescents and adults. What we see are roller coaster rides, with ups and downs" (p. 3). 102 Unrealistic expectations, including those for independent living and consistent sustained change appear to be one of the greatest pressures placed on adults with FASD. This may account for some of the extreme difficulties with motivation and relapse noted for adults with FASD (Breen, 2000; Hume et al., 2005; Kleinfeld et al., 2000; Kyffin et al., 2005; LaDue, 2002; Schmidt, 2005). As Breen (2000) indicates, "it is impossible for someone to succeed if they do not know what it is" (p. 11 ). Furthermore, it is unlikely to expect individuals who have historic difficulties with often punitive-based services to trust, or want to try something new or unknown. As adult expectations, differ greatly from childhood and adolescent, this difficulty with motivation may have a significant impact on the effectiveness or participation in interventions and supports (LaDue, 2002). Given these results, it is perhaps not surprising that some preliminary programs and services available for adults with FASD recommend comprehensive and intensive individualized services founded on solid FASD knowledge, strong personal relationships, low staff to client ratios, and an unwavering belief in individual abilities (e.g., Breen, 2000; Hume et al., 2005; Fetal Alcohol Syndrome Society of Yukon, 2003; Grant et al., 2004; LaBerge, 2004; Kyffin et al., 2005; Options for Independence, 2003; National Homelessness Initiative, 2003; Schmidt, 2005). As Schmidt (2005) argues it is the basic human needs; namely, to matter, to be heard, to understand, and to be understood, that provide an effective grounding, or starting place for interventions for adults with FASD. The literature suggests that interventions need to account for the individuality and lived experiences of adults with FASD. Adults with FASD require supports and services that involve realistic expectations, take the time to listen, and build on their strengths. A respected and supported voice in the planning process, in combination with 'wrap­ around' or interconnected services, is also recommended (Dupius & Urness, 2004). Other recommendations involve the development of supportive networks and the 103 provision of transition services. As Massey (1997) concluded in her qualitative study on adults with FASD: Although the marginalized participants in this exploration were unable to access the few resources available, they might never take their first steps toward personal change if they were forced to do it alone. For too many of them, there was no one to stand beside them and show them the possibility of different way of being ... but, if there was a place to go where they could be understood and heard, it might go along way to alleviating the isolation which kept them so firmly in their places, (p. 208) Living situations. As indicated earlier, one of the main barriers to optimal functioning for adults with FASD is the lack of access to supportive living environments. Many adults with FASD are living in the marginalized and disenfranchised populations within our society (Brownstone, 2005; Lutke & Antrobus, 2004; Massey, 1997; Rutman et al., 2002). They are often without adequate housing and isolated from family, community, and culture. Personal safety concerns are a daily companion for many (Up North Training Services, 2002). Furthermore, professionals and families have identified that the lack of adequate living situations and resulting support networks are two of the basic and most often unmet needs for adults with FASD (Abraham, 2005; Bert & Bert, 1992; Breen, 2000; Brock, 2000; Brownstone, 2005; Clark, 2003, Clark et al., 2004; Connor et al., 2000; Connor & Streissguth, 1996; Conry & Fast, 2000; Copeland & Rutman, 1996; DeVos, 2003; Dubeski, 1997; Dyer et al., 1997; Health Canada, 2002; Hess & Neimann, 1997; Gibson, 2003; Graefe, 2003; Kleinfeld et al., 2000; Kyffin et al., 2005; LaDue, 2002; LaDue, 1993; Loser et al., 1999; Lutke & Antrobus, 2004; Massey, 1997; Michaud & Michaud, 2003; Nanson & Brock, 2000; National Homelessness Initiative, 2003; Novick & Streissguth, 1996; Options for Independence, 2003; Porter et al., 1997; Roberts & Nanson, 2001; Russell, 2000; Rutman et al., 2005; Rutman et al., 2002; Schmidt, 2005; Schumcker, 1997; Streissguth, 1997; Streissguth et al., 2004; Streissguth et al., 1996; Streissguth et al., 1991; Streissguth et al., 1988; Trudeau, 2002; Up North Training Services, 2002). 104 Not surprisingly, these results indicate that to be successful, housing for adults with FASD needs to be much more than a place to live; it needs to be a safe place to belong (Brownstone, 2005; Options for Independence, 2003; National Homelessness Initiative, 2003). As Lutke and Antrobus (2004) summarize: Housing - especially housing that is a home - means being part of a community, socializing, buying groceries, accessing transportation and community services, forming relationships and friendships, developing history, and having a safe place to go and be. These are crucial components of being able to take part in society in a meaningful way, and will be essential for those growing up with FASD. (p. 30) Without housing it is obviously very difficult to belong, have friendships, work, participate in programs, and be part of a community. To provide for belonging, housing services need to take into account both the organic brain dysfunction inherent to FASD and the lived experiences of many of the adults they will serve (Brownstone, 2005; Kleinfeld et al., 2000; Lutke & Antrobus, 2004; National Homelessness Initiative, 2003; Options for Independence, 2003; Up North Training Services, 2002). Housing options also need to reflect the continuum of extremely variable and complex strengths and deficits facing adults with FASD (Lutke & Antrobus, 2004). Recognition that not all persons with FASD are the same or require the same sort of approach or services is essential. Furthermore, as Brownstone (2005) states, "it is clearly understood that, even with housing, without supports many people with FASD will not stay stable" (p. 1). Provisions for responsive non-punitive crisis support in addition to consistent on-call support should be considered. Housing guidelines, policies, and structures need to reflect and anticipate the unique needs of this population (Brownstone, 2005; Kleinfeld et al., 2000; Lutke & Antrobus, 2004; National Homelessness Initiative, 2003; Options for Independence, 2003; Up North Training Services, 2002). Housing options should expect and plan for the maladaptive behaviours (not willful misconduct) that result from brain damage, and need to be based on the premise that change may be a very slow process. 105 Leisure and recreational programs should also be considered integral (Lutke & Antrobus, 2004). Kleinfeld et al. (2000) reported that for those families who have found successful housing options for adults with FASD, the following features applied: small, family like setting: peers who do not model delinquency; sheltered employment and job coaching links; lots of activities; and, close proximity to their families and/or support networks. Therefore, it appears likely that models, such as those proposed by Brownstone (2005) or Lutke and Antrobus (2004), which argue for a continuum of non-punitive, integrated housing options in combination with community education and additional supports, may be effective. Raymond and Belanger (2000) noted that parents often worked hard to set up healthy living situations, but were then undermined by service cuts, inappropriate structures, policies, and/or the negative influences of 'friends'. In contrast, the Options for Independence program (2003) reported that adults with FASD knew how they wanted to live, but needed support for finding and maintaining appropriate housing. Initial reports on some preliminary supported living programs anecdotally note positive outcomes (see Options for Independence, 2003; National Homelessness Initiative, 2003). Both of these models included community education, advocacy, and programming components. From these studies, it appears evident that a 'one size fits all approach' will not be effective. Additional services and study are clearly needed. Systems impacts. Involvement in several disassociated services is another life circumstance that may affect optimal functioning for adults with FASD. Due to the multifaceted nature of this disorder, the lack of systemic or Ministry level recognition of the disability and resulting difficulties with social integration and daily function, adults often find themselves involved in the legal, employment, education, and social systems (Abraham, 2005). Discordant involvement with these systems clearly impacts the decisions and options available to many adults with FASD (Kacki, 2004; Schmidt, 2005). 106 1■Legal System. Unfortunately no section on lived experiences for adults with FASD would be complete If It did not discuss possible Involvement with the legal system. As Lutke and Antrobus (2004) summarize "the corrections system Is the only system that cannot deny 'eligibility' - In the absence of supports (housing, employment programs, counselling, support workers, etc.) It Is the default social safety net for adults with FASD" (p. 21). Or as Justice David Vickers notes, "seldom are people prepared to link criminal conduct In their community to an Inadequate social support system" (cited In Conry & Fast, 2000, p. xlv). It Is unknown how much criminal conduct or victimization would be avoided for adults with FASD by provision of appropriate services. However, the research results strongly Indicate that Interventions and services need to consider that the adult may be Involved (as victim and/or perpetrator) In the legal system (Clark et al., 2004; Moore & Green, 2004; Rutman et al., 2002; Schmidt, 2005; Streissguth & Kanter, 1997; Streissguth et al., 2004; Streissguth et al, 1996; Streissguth et al., 1991). Results from Clark (2003), Loser et al., (1999), and Streissguth et al. (1996, 2004) Indicate that early diagnosis and provision of supportive living environments may result In decreased rates of both victimization and Involvement with the law. These studies also Indicate that adults with FASD who have a concurrent substance abuse problem or who have experienced or witnessed violence were more likely to be victimized and to display criminal behaviour (Clark, 2003; Streissguth et al., 1996). This Indicates that rates of Involvement with the law may be decreased through recognition and provision of adequate supports (Loser et al., 1999). Life histories suggest, however, that even with support many adults with FASD may still come In contact with the legal system (Clark, 2003; Kleinfeld et al., 2000; Lutke & Antrobus, 2004; Rutman et al., 2002; Streissguth et al., 1996). Therefore Conry and Fast (2000) and Michaud and Michaud (2003) recommend adults with FASD be specifically taught what to do If contacted by the police. They recommend all adults with FASD carry an 107 information card outlining their diagnosis and its implications for the justice system, and that a lawyer knowledgeable about FASD be contacted. As the legal system is based on the premise that individuals can appreciate the nature and consequences of their acts, including the connection between an intentional act and resulting punishment, results indicate that FASD poses a serious ethical challenge to the legal system (Boland et al., 2002; Conry & Fast, 2000; LaPorte et al., 2000; Lutke & Antrobus, 2004; Mitten, 2003; Moore & Green, 2004; Streissguth & Kanter, 1997). Concerns surrounding valid investigative procedures, fitness to stand trial, testimonial capacity and reliability, effective representation, persistent recidivism, false confessions, and sentencing are beginning to be systematically questioned (Conry & Fast, 2000; LaPorte et al., 2000; Mitten, 2003; Moore & Green, 2004; Streissguth & Kanter, 1997). Involvement with the law and legal systems clearly places individuals with FASD at a disadvantage and exacerbates their difficulties. One only needs to imagine becoming involved with the legal system to understand the potential impacts on daily life. Several reports (Boland et al., 2002; Conry & Fast, 2000; Lutke & Antrobus, 2004; Moore & Green, 2004; Streissguth & Kanter, 1997) provide insights into possible improvements which include: adequate service provision, training for all legal personnel, provision of diagnosis and assessment, establishment of modified protocols of treatment and sentencing (including alternatives to incarceration, plus realistic transition and aftercare planning), and provisions for interpretation and advocacy. 2. Social svstems. Not surprisingly the literature also indicates that adults with FASD are likely involved in a variety of social systems, such as social assistance, due to difficulties with independent living and employment (Abraham, 2005). These results imply it is the structures, policies and approaches surrounding social systems that have a direct impact on lived circumstances for adults with FASD (Abraham, 2005; 108 Brownstone, 2005; Kacki, 2004; LaBerge, 2004; Rutman et al., 2005). For example, Massey (1997) noted that the adults in her study could not afford to work because employment meant they would be cut off social assistance (i.e., consistent income) and would bring no advantages to their children for whom maintaining social assistance meant they would be fed, clothed and have access to healthcare. Whereas Rutman et al. (2005) and Kacki (2004) found that parents worried that asking for help, diagnosis or accessing supportive services would result in child protection issues, and would be interpreted as an inability to cope or parental abandonment. These are just a few examples that indicate a close look at the impact of these systems and policies are needed (see Abraham, 2005; Rutman et al., 2005). As with the general population, the research reveals that a significant number of adults with FASD are also parents (Abraham, 2005; Grant, Ernst, Streissguth & Porter, 1997; LaBerge, 2004; Massey, 1997; Porter et al., 1997; Rutman et al., 2005). Due to an absence of sustained, long term supports and compounding secondary disabilities, many of these adults may also find themselves raising children prenataiiy exposed to alcohol (Abraham, 2005; LaBerge, 2004; Porter et al., 1997). Parenting poses many challenges and rewards for adults with FASD; however, results indicate the majority of adults with FASD are unable to care for their children without support (Abraham, 2005; Grant et al., 1997; LaBerge, 2004; Massey, 1997; Porter et al., 1997). Therefore, involvement in child custody investigations and procedures is also another reality faced by many individuals with FASD; one which clearly has impacts on daily function (Abraham, 2005; Rutman et al., 2005). In addition, Abraham (2005) found that inadequate services and supports such as transportation, child care, social benefits, and housing also hindered the ability to parent successfully. Community awareness, professional education, practical assistance with daily living issues, outreach support, parenting programs, advocacy, and openness to shared 109 custody or respite arrangements have all been recommended as possible supportive components for adults parenting with FASD (Abraham, 2005; Grant et al., 1997; Grant et al., 2004; Rutman et al., 2005). 3. Education and emplovment svstems. Two other systems that adults with FASD are likely to encounter are educational and employment systems. Very little research in these areas exist; however, Streissguth et al (1996) found that 80% of the adults were unable to obtain or retain a job. Problems with employment included: frustration, poor task comprehension, poor judgment, social problems, and unreliability (Streissguth et al., 1996). Thirty percent indicated they lost jobs without understanding why (Streissguth et al., 1996). In contrast. Loser et al. (1999) found that with the provision of supported living over half of their participants were able to maintain work. Both Breen (2000) and Schmidt (2005) have reported on employment programs designed for adults with FASD. Their results indicate that vocational skills training (including advocacy), provision of supported employment opportunities, and community education may provide an effective approach for increasing employment opportunities for adults with FASD (Breen, 2000; Schmidt, 2005). Staff belief in individual student ability and a willingness to rethink previous experience and training were seen as essential components. FASD knowledge in combination with an openness to look at one's own behaviour, and a willingness to adjust and change expectations, accept student decisions and modify the environment were also noted. As the Focus program reported on by Schmidt (2005) involved a strong education component, the following educational strategies were anecdotally noted as being effective for adults with FASD: • focus on strengths and abilities • model appropriate behaviour • adhere to routine within a structured classroom environment 110 limit visual and auditory stimuli present information in a concrete manner highlight linkages between concepts utilize visual and tangible cues utilize role modeling and hands-on approaches provide context specific learning plan for transitions allow more time for task completion teach strategies for memory retention and social communication explain FASD characteristics and how they may affect student learning Other recommendations included the importance of consistency in staff, the provision of constant supervision/support, and the utilization of a caring, calm, nonjudgmental, non­ reactive approach (Schmidt, 2005). Job success was dependent on successfully matching student strengths and interests with placements and education, as well as the modification of work environments to meet the needs of the individual (Breen, 2000; Schmidt, 2005). The willingness of employers to understand and adapt to the needs of the individual with FASD could not be understated and was found to be a crucial element to job success. Student involvement and realistic expectations (including allowing for backsliding or relapses) were also considered fundamental. Schmidt (2005) reported that program success was dependent on an individualized relationship and strength-based approach. T he developm ent of support networks and inclusion of cultural components, safety procedures, and advocacy as well as comprehensive staff and community FASD education were seen as essential (Schmidt, 2005). Breen (2000) also reported that adequate support or assistance on the job and consideration of motivation and skill 111 issues were crucial. Both these investigators noted that inconsistent results, unrealistic expectations for a permanent "fix", and that motivational and relapse issues were a constant challenge. As Breen (2000) summarizes; Success goes far beyond whether they are able to complete a course or even able to hold a job for a period of time. Success really means that they will be able to make use of enhanced vocational opportunities to exercise increased control over their lives rather than reacting to apparently overwhelming and uncontrollable events, (p. 4) Intervention implications. Knowledge of the lived experiences of adults with FASD provides essential insight into some of the perplexing behavioural and motivational issues which may be missed if a strictly clinical or treatment approach is taken. These insights are particularly relevant as results indicate adults with FASD are vulnerable and susceptible to volatile circumstances which have been shown to exacerbate negative outcomes (Conry & Fast, 2000; Dyer et al., 1997; Rutman et al., 2002; National Homelessness Initiative, 2003; Michaud & Michaud, 2003; Options for Independence, 2000). Furthermore, FASD research results are also beginning to indicate that given these realities adults with FASD may require ongoing, intensive support without which they may not sustain psychosocial and environmental gains (Hume et al., 2005). Yet the lives of adults with FASD, given their deceptive appearance of capability, often remain invisible to service providers and the community (Clark, 2003). As a result, neither their lived experiences nor organic brain dysfunction are often considered when designing supports. It currently appears that "those suffering from FAS/FAE are seemingiy invisible to educational institutions and social service agencies which should be helping them and their families" (Raymond & Beianger, 2000, p. 95). The overall findings imply that a multi-factoral model of influence, including environmental and lived experiences, needs to be considered when developing interventions and supports for adults with FASD. The results suggest that environmental factors may have the most significant influence (positive or negative) on outcomes for 112 adults with FASD. Furthermore, findings are beginning to indicate that failure to consider these environmental factors, or the individual context behind this disorder, may compromise the effectiveness of interventions and supports because the types and levels of supports needed vary widely (Hume et al., 2005). Adaptive Functioning All of the previously-mentioned factors come together to create profiles of individuals who are likely to have significant deficits in their adaptive functioning. This finding cannot be overstated, as it irrevocably implies that the majority of adults with FASD are unable to function successfully at the day-to-day level without support (Berg et al., 1997; Bookstein et al., 2002; Clark, 2003; Clark et al., 2004; Connor et al., 2000; Conry & Fast, 2000; DeVos, 2003; Dorris, 1989; Dubovsky, 1998; Fetal Alcohol Syndrome Society of Yukon, 2003; Grant et al., 2004; Hume et al., 2005; Kerns et al., 1997; Kleinfeld et al., 2000; LaBerge, 2004; LaDue, 2002; LaPorte et al., 2002; Lutke & Antrobus, 2004; Malbin, 2002; Michaud & Michaud, 2003; National Homelessness Initiative, 2003; Rice, 1992; Roberts & Nanson, 2001; Rutman et al., 2005; Rutman et al., 2002; Schmidt, 2005; Stratton et al., 1996; Streissguth, 1997; Streissguth & O'Malley, 2000; Streissguth et al., 2004; Streissguth et al., 1996; Streissguth et al., 1991). Furthermore, the literature review also reveals that these deficits appear to become more significant or acute as individuals with FASD move into adulthood. Description o f adaptive functioning. Adaptive functioning, or behaviour, generally refers to competence in areas of functional independence. It is the degree to which an individual meets the social and community expectations for establishing personal independence, maintaining physical needs, conforming to social norms and sustaining interpersonal relationships (Conry & Fast, 2000; Russell, 2002). Adaptive function includes life skills such as functional academics, communication, money-management, self-care, positive social relationships, independence, and appropriate judgment in work. 113 school and community situations (Conry & Fast, 2000; Dupius & Urness, 2004; Russell, 2002; Streissguth et al., 2004; Streissguth et ai,, 1996; Streissguth et al., 1991). As Russell (2002) explains, adaptive behaviour is expected to change with age; therefore, adaptive competence is defined by typical age and culturally expected performance, not ability. An individual may have the ability to perform certain activities, but if that ability is not demonstrated in correlation with age or cultural expectations, then the adaptive skill in that area is assessed as being inadequate. During adulthood, expectations surrounding adaptive function focus on making successful personal, social, and vocational adjustments. This includes the ability to live independently, maintain functional long-term relationships, parent, find and maintain work, and assume adult roles within society (LaDue, 1993). Studies on adaptive function. Streissguth et al. (1991) were the first to note the striking deficit in adaptive behaviours for adults with FASD. Utilizing, Vineland Adaptive Behaviour Scores (VABS), which includes measurements in communication, daily living skill, socialization skill, and motor skill domains, they found that all of their adult participants, regardless of IQ level, experienced significant delays in adaptive function. They found IQ levels did not correlate with nor predict adaptive scores. Furthermore their results indicated the average overall adaptive functioning levels were 9.2 years behind the chronological age of their participants. Thus, their results imply that an adult with FASD who is 21 years old may have the daily living and/or socialization skills of an 11 year old. Furthermore, they found that although the domain profile and outcome varied between individuals, not one participant displayed age-appropriate social skills. Their results suggest a particular deficit in social function and showed high levels of maladaptive behaviour. More recent longitudinal studies (Streissguth et al., 2004, Streissguth et al., 1996) on a different sample of adults 21 years and older (n=90), have corroborated 114 these original results. Deficits in adaptive behaviour, were found to be 1 to 1.5 standard deviations below respective IQ scores. Their results indicated that for those adults with FASD over the age of 21, over 80% were unable to live independently, and although the IQ median of the adult sample was 86, the VABS median was 62 (Streissguth et al., 1996). Detailed assessments of daily living revealed: 83% had difficulty managing money, 78% needed assistance making daily decisions, 70% needed assistance in obtaining social assistance, 67% required assistance obtaining medical care, 57% had difficulties with interpersonal relationships, 52% needed help obtaining groceries, and 48% had difficulties with structuring leisure time and staying out of trouble. This study (Streissguth et al., 1996) also noted that adult participants experienced social difficulties which significantly compromised daily function: 80% displayed poor social judgment, 75% had poor organizational skills, 70% demonstrated a lack of initiative, 60% had trouble controlling their temper, and over 55% were isolated, had trouble getting along with others, and making or keeping friends. Russell (2002) also studied adaptive behaviour outcomes using VABS and Scales of Independent Behaviour - Revised (SIB-R). Her results indicated that 100% of the participants had lower adaptive functioning than that which could be accounted for by cognitive disability or IQ. Eighty seven percent of participants with IQ scores above 70 had adaptive functioning scores below 70. Overall, adaptive quotient scores ranged between 6 to 56 points lower than IQ. Two other studies have also shown deficits in adaptive function. Clark (2003) found that 78% of the participants (n=62) required high to moderate levels of care, yet only 37% had IQ levels below 70. Adaptive functioning was found to have a greater effect on the rate of secondary disabilities than on cognitive function; therefore, it was considered a better predictor of future problems (Clark, 2003; Clark et al., 2004). Raymond and Belanger (2000) also noted similar results using the VABS and SIB-R 115 suggesting that IQ measures do not determine levels of dysfunction, nor do they demonstrate intervention needs. Their results imply that measures of adaptability and sociability were more appropriate to determine capacity to function. Furthermore, they noted that "unlike IQ measures, these [adaptive functioning] test results can be used to develop individual plan recommendations and to determine how much time and energy should be invested in trying to modify the behaviour, alter the environment, or simply change expectations" (p. 78). These results corroborate anecdotal evidence, which consistently notes difficulties with adaptive function and the lifelong need for support (Berg et al., 1997; Conry & Fast, 2000; DeVos, 2003; Dorris, 1989; Dubovsky, 1998; Gibson, 2003; Graefe, 2003; Grant et al., 2004; Kleinfeld et al., 2000; LaBerge, 2004; LaDue, 2002; Lutke & Antrobus, 2004; Lyons, 2004; Malbin, 2002; Michaud & Michaud, 2003; National Homelessness Initiative, 2003; Rice, 1992; Rutman et al., 2005; Rutman et al., 2002; Schmidt, 2005; Stratton et al., 1996; Streissguth, 1997; Streissguth & Q'Malley, 2000; Trudeau, 2002). Moreover, they indicate that adults with FASD will likely have problems with the most basic requirements of day-to-day living including: managing money, getting and maintaining employment and using leisure time in healthy and acceptable ways (Conry & Fast, 2000). Implications for interventions and supports. Although it remains important to assess cognitive skills, academic abilities, physical outcomes, and neuropsychological functioning, the composite results indicate that assessment of adaptive behaviour may provide the most crucial information regarding interventions and supports for adults with FASD. As Conry and Fast (2000) note "anecdotal and research evidence points to impairment in the development of adaptive skills as the most devastating long term disability associated with FAS/FAE" (p. 17). Adaptive functioning assessment, therefore, should be considered essential to intervention and support design (Russell, 2002). 116 Streissguth and O'Malley (2000) caution that the validity of functional assessment may vary as a result of the setting In which It Is administered In (e.g., prison versus home environment). In addition, other research (Dupius & Urness, 2004; Malbin, 2002; Kleinfeld et al., 2000) suggests that a "catch-up" time or positive adaptation may occur after the age of 25. No studies were found to confirm this and many dally living deficits have been linked to what appear to be permanent cognitive Impairments (Connor et al., 2000). Therefore, this review suggests that this finding or assumption about the level of catch-up should be viewed with extreme caution. Current studies Involving age ranges up to and above 40 years have documented persistent adaptive functioning delays (Clark, 2003, Streissguth et al., 1991; Streissguth et al., 1996). Furthermore, some researchers have suggested that adaptive functioning deficits, particularly In the area of social skills, may be arrested rather than delayed for this population (Stratton et al., 1996) What Is evident, however. Is that adaptive function deficits are likely to restrict an Individual's ability to live successfully In the community without support, and may explain why adults with FASD display such a high number of life skill difficulties (Dupius & Urness, 2004). As Clark (2003) summarizes "adults with FASD can have deficits In adaptive skills that make performance of day-to-day activities difficult. If not Impossible, while still possessing a measured Intelligence quotient of 70 or greater" (p. 76). Difficulties with adaptive function affect the ability to: handle complex social relationships, develop sexual maturity, develop a sense of self and Identity, and assume adult work and family roles. The research results Indicate that lifelong assistance with varying levels of dally supports Is likely needed. In addition, deficits In adaptive function Indicate that a key concept to Interventions or supports, as articulated by Malbin (2002), should be to "think younger." Advocacy, mentorship, and support for dally living, as well as continuing social, life, and 117 vocational skill training are also recommended to improve adaptive functioning outcomes (Conry & Fast, 2000; DeVos, 2003; Dorris, 1989; Dubovsky, 1998; Dupius & Urness, 2004; Gibson, 2003; Graefe, 2003; Grant et al., 2004; Hume et al., 2005; Kleinfeld et al., 2000; LaBerge, 2004; LaDue, 2002; Lutke & Antrobus, 2004; Lyons, 2004; Malbin, 2002; Michaud & Michaud, 2003; National Homelessness Initiative, 2003; Rice, 1992; Rutman et al., 2005; Rutman et al., 2002; Schmidt, 2005; Streissguth, 1997; Streissguth & O'Malley, 2000; Trudeau, 2002). Summary o f Optimal Function Considerations This reviewer concurs with other authors who indicate that the research and the clinical literature on adults with FASD are still in their preliminary stages and that generalizations should be viewed with caution (Baumbach, 2002; Roberts & Nanson, 2001; Rutman et al, 2002; Stratton et al., 1996; Streissguth, 1997). Significant gaps in the literature still remain and much of the current research has not been scrutinized in a scientific manner. The lack of consistent diagnoses, adequate controls, and sample size limit the ability to generalize findings. In addition, there have been almost no replications of studies. It is also currently difficult to determine if the factors noted are specific to individuals exposed to prenatal alcohol. Evidence-based research is greatly outweighed by results stemming from evidence-based practice. However a high degree of congruence appeared within and between these two extant streams of literature, especially in terms of articulating key factors that may affect optimal functioning in adults with FASD. The most consistent finding noted was that adults with FASD display very individualized profiles of strengths and deficits. The evidence indicates that no single profile is characteristic of individuals with FASD. As Dupius and Urness (2004) summarize, "to say someone has been diagnosed with FASD only provides an awareness of the possible areas of deficit. It does not provide information about the 118 degree of deficit or the pattern of strengths for any one individual" (p. 22). However, it is acknowledged that despite the individuality of the profile, many adults face significant challenges, especially in the area of socialization. What also became evident were both the pervasive nature of this disorder and the irrefutable salience of FASD as a disorder facing adults. Overall function is compromised by a number of cognitive, physical, emotional, environmental, and societal factors. This multifaceted confluence of impact needs to be considered when designing interventions and supports for this population. Interventions not based on a holistic, multidisciplinary, coordinated approach may miss key components of function which may compromise overall intervention effectiveness. The evidence indicates that despite an initial deceptive appearance of capability, the majority of adults with FASD need support with decision making, practical living skills, developing adequate personal support networks, and accessing needed services. The composite results suggest that FASD is a unique disability that represents a challenge to conventional social interaction and professional practice or treatments. The results from this review indicate that individual function is particularly sensitive to the influence of environmental factors. Adults with FASD appear to function best in supported, predictive, and stable environments. Therefore, it is recommended that interventions build on environmental modifications which may modulate deficits and magnify strengths. Environmental modifications should be reassessed and maintained over the long term to prevent a return to maladaptive behaviours. Advocacy and direct teaching of self-regulation in combination with other environmental modifications show strong potential for an effective intervention approach. In addition, the review of factors influencing optimal functioning for adults with FASD reveals that the challenges faced by these individuals do not fit a medical model 119 but have significant societal impacts as well. This reality has direct implications for intervention and support and it is best summarized by Streissguth (1997), who stated: When I first gathered researchers together from around the world to address scientific questions about alcohol's effect on prenatal development, I viewed the challenge as both scientific and educational. Through science, the answers would be found; through education, the necessary policies would emerge. After 25 years of work with the long term consequences that fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) have on adolescents and adults with the syndrome, the issues for me have changed ... I realize how poorly our society is equipped for helping them, and as I see each generation repeating the cycle, I realize that science and education alone are not enough to solve this tragic problem. It is essential that we reach a level of public knowledge that will fuel tremendous change - change of a magnitude we have only now begun to appreciate. Research is still needed - but research of a different sort; not just on causes but on lives and specifically on the type of help children and adults affected by fetal alcohol syndrome need to lead productive lives and to control costly and painful secondary disabilities, (pp. 279-280) The final theme that became evident through this review is the undeniable permanency of the deficits associated with this disability. Brain studies alone irrefutably indicate that FASD is a lifelong disability that one does not outgrow (Riley et al., 2004). This does not mean that adults with FASD do not have significant strengths, cannot live fulfilling lives, and/or benefit from supports and interventions. One only needs to read Kleinfeld et al. (2000) or Rutman et al. (2005) to dispel this myth. Nor does it mean that FASD defines the lives of adults with this disorder (Berg et al., 1997; Rutman et al., 2002). Rather the view of FASD as a lifelong disability indicates that policies, strategies or interventions which focus on personal autonomy and choice are likely to have very little benefit and, more importantly, may be potentially damaging to the individual. Furthermore, services or supports that "rely on the ability of individuals to learn and retain new skills and generalize them to new situations are unlikely to yield many benefits" (Clark, 2003, p. 110). A lack of services to meet basic needs was also documented for many adults with FASD. It is not socially just to wait for a crisis to emerge before adequate services 120 are provided for these individuals. One does not hesitate to provide compensatory support for visible disabilities; therefore, one should not hesitate to provide compensatory support for adults with FASD who have an invisible disability. Realistic expectations and systematic or Ministry recognition (including policy development) of the difficulties facing adults with FASD are essential to interventions and supports. Although the organic brain damage and concomitant shortfalls may not be readily visible, this review reveals they have pervasive impacts and interfere with the ability to live independently and/or to enjoy a high quality of life within the community (Clark, 2003; Grant et al., 2005; Dupius & Urness, 2004). The results of this review validate the urgent need for support services for this population which displays serious, life-long functional deficits. 121 Discussion o f Intervention and Support Themes Only three preliminary empirical studies were located that assessed the efficacy of interventions and supports for adults with FASD. However recommendations of "effective" supports and interventions appeared throughout the composite literature. These intervention concepts, which were based on empirical results, extensive clinical and professional practice, and lived experience formed consistent themes. In fact the almost absolute consensus seen in terms of recommendations, despite the differing location, date, or nature of the literature, suggests that these recurring themes have some validity and should be considered solid reference points for further research. A similar trend was also noted by Premji et al. (2004). The lack of an empirical basis, however, does require that the information be viewed with prudence. Key Areas o f Support The need for adequate supports and services for adults with FASD was a consistent theme throughout the literature. The results from this review suggest that the majority of adults with FASD have very few resources to assist them with achieving successful interdependence and many are living with unmet basic needs. Recommendations regarding direct service and support provision occurred throughout the literature. The most consistent theme noted was the need for extensive professional education and community-capacity development. Other recommendations for key areas of service included provision of: • supported housing options • daily living supports • adequate health and financial supports • employment and educational options 122 • parenting and family planning supports • supported social, leisure and recreational activities • family/caregiver respite • adequate access to diagnosis and assessment Although services and supports are needed in all of these areas, the results suggest the most urgent service need for adults with FASD may be the need for supportive housing options. Development of policies and practices that recognize the adulthood challenges of FASD, especially in the areas of social assistance, justice, mental health, and addictions, were also consistently noted throughout the literature. Two other themes that emerged were the need for the coordination or integration of services, and the provision of increased opportunities for meaningful participation in the community. The final underlying theme was a need for consistency in service and/or program provision. Key Intervention Principles The review of optimal function considerations illustrated the many potential challenges associated with providing interventions and supports for adults with FASD. It also articulated the compelling need for improved function in home, educational, vocational, and social settings. This review indicates that in order to achieve these outcomes there are some key underlying intervention principles that need to be considered. These principles are central to the compensatory notion of "trying differently, not harder," (Malbin, 2002) which this author found to be a foundational tenet of working effectively with individuals with FASD. 1. Provide structure and support. One of the most predominant principles underlying effective intervention recommendations was the need to provide structure and support for adults with FASD. The results indicate that structure and support provide 123 a reference point from which adults with FASD can make sense of the world and be secure. Given difficulties with communication, generalization, memory, planning, prediction, and impulse control, structure and support are needed to establish routine, create predictability, provide consistency, and ensure expectations are realistic. This enables individual control and mastery over one's environment. In this sense structure and support do not refer to rigid rules and control, rather they are mechanisms by which incoming information and stimuli can be modulated and organized so that the affected adult is not overwhelmed. This review suggests that environmental modifications that decrease stimulation and distracting influences may greatly improve outcomes and help the affected individual maintain emotional control. Development of support networks, teaching of self-regulation strategies, and provision of advocacy are three additional methods that may add needed structure and support. It is crucial that provision of adequate structure and supports is based on individual strengths to create environments where adults with FASD can meet success rather than failure. 2. Be concrete. Given information processing difficulties, functional academic limitations, difficulties with generalization, and abstract concepts, and difficulties modulating incoming stimuli, the literature recommends that interventions for adults with FASD should focus on keeping information simple and concrete. Limiting distractions, breaking information into manageable pieces, clarifying expectations, and utilizing simple, concrete, multimodal communication strategies are recommended. 3. Manaae transition and change. Another consistent principle that emerges from the literature is the need for interventions and supports to recognize that periods of transition and change are particularly challenging for adults with FASD. This includes times when individuals move from one activity to the next, or when they experience 124 novel or unexpected situations. Planning ahead, and providing adequate support and visual cues may increase success in these situations. 4. Engage in relationships. The final and perhaps most significant theme that emerged from the literature was that to be successful, interventions and supports for adults with FASD need to be based on a positive relationship. This foundational principle results in the respect and recognition of the unique individuality of adults with FASD and it facilitates increased appreciation and understanding of their individual situations, abilities, capacities, and complex needs. This suggests that relationships may provide the most functional lens for understanding behaviours and designing successful intervention and support. Taking time to listen, accepting their view of the world, and using a respectful, non-judgmental approach are critical and are central to the notion of trying differently. They are also critical to ensuring voluntary and involved participation in programs and services designed to meet the needs of the affected individual. Key Support Components In addition to service and principle recommendations, the literature also revealed consistent themes regarding the overall components of effective intervention for adults with FASD. These themes suggest that interventions and supports need to be comprehensive, individualized, person-centered, strength based, long term, and advocacy oriented. 1. Comprehensive support. Given the complex, multidimensional nature of problems facing adults with FASD, the literature suggests interventions need to be multidisciplinary, comprehensive, and coordinated. Interventions need to take into account the personal, social, geographical, and cultural circumstances of individuals and their families, as well as be flexible enough to meet emergent needs. Furthermore, as FASD affects all areas of life, interventions need to encompass a range of areas in a coordinated manner including daily living needs (e.g., money management, housing. 125 decision making, community integration, personal support network development), clinical needs (e.g., medical and mental health, social and justice services), and programming needs (e.g., educational/vocational, social/recreational, life skills). 2. Individualized, person-centred, strength-based. Given the varied manifestations of FASD, the literature review indicates that effective interventions need to accommodate the differing types and degrees of supports required for adults with FASD. By taking an individualized and person-centred approach and by focusing on individual strengths, the intervention/support can be designed and adapted to meet the unique and changing needs of the individuals and their families. Multidisciplinary assessment and diagnosis, in combination with personal knowledge, provide a solid knowledge of individual strengths and deficits. Assessment can identify which interventions are realistic, practical, and designed to match the individual's profile or needs. In addition, assessment allows for the identification of existing strengths which can be used to counteract or decrease problematic behaviour. Taking a person-centred, strength-based approach recognizes the importance of involving the individual and his/her support network fully in the determination of needed interventions and or supports. This approach recognizes and respects the individuality, capacities, and strengths of adults with FASD. In addition to benefiting self-efficacy, it can also have a significant impact in terms of long-term motivation and participation in the intervention, which is often a significant barrier as many adults may be unwilling to participate in interventions and supports designed to meet their needs. Furthermore, it ensures that interventions and supports occur where and when they are needed. 3. Long term. The third consistent theme that emerged from the literature is that the majority of adults with FASD will need long term, flexible support. Autonomous independence is not a realistic goal for the majority of adults with FASD. There are no quick fixes and the type and intensity of interventions/support will likely vary as the 126 individual moves through life. Thus, interventions need to be flexible. Relapses into previous behaviour patterns are common and they need to be anticipated within intervention design. Interventions need to involve an unconditional commitment to ongoing support for the adult with FASD by focusing on realistic, gradual change and by providing continuing adequate support to ensure success. It is essential that adults with FASD are not cut off from needed services due to their success in the program. If an individual is doing well, it is likely the direct result of the supports provided. Lived experiences indicate that the removal of these supports should be done with extreme caution. Conversely, adults with FASD should not be punished and/or have services taken away as a result of unrealistic policies, regulations, structures, and practices. 4. Advocacv/Coordination. The final consistent theme that appeared throughout the literature was the need for effective interventions and supports to include an advocacy component. The literature suggests that advocates can be successful in supporting individuals with FASD by providing both a supportive relationship and the "neurological infrastructure" in which the individual with FASD may be deficient. Advocates can also play an integral role in community capacity development. In addition to helping the affected individual interpret the world and assisting the world in understanding the individual, advocates can help the individual understand him or her self. Advocates can assist with coordination and access of interventions and services, assess the gulf between expectations and capabilities, and between ambitions and success, individualize responses, and help the person with FAS/FAE develop more effective coping strategies. In addition, advocates can work within the environmental context to bring expectations in line with the person's capabilities. A dministra tive Considéra tiens A final theme that appeared throughout the literature involved recommendations regarding administrative considerations for effective intervention. The review results 127 indicated that effective support for adults with FASD will likely require an administrative commitment to individualized, consistent, intensive, and comprehensive interventions; as well as a willingness to modify service eligibility criteria (Breen, 2000; Copeland & Rutman, 1996; Grant et al., 2004; Kacki, 2004; LaBerge, 2004; National Homelessness Initiative, 2003; Novick & Streissguth, 1996; Raymond & Belanger, 2000; Schmidt, 2005). Although this may be considered expensive, preliminary analysis indicates that provision of this type of support is significantly less costly than paying for the secondary disabilities associated with FASD (Lutke & Antrobus, 2004; Rutman et al., 2005). Furthermore, the literature indicates that effective interventions require that all staff, including the administrative staff, are thoroughly trained in FASD (Copeland & Rutman, 1996; Grant et al., 2004; Schmidt, 2005). A belief in the abilities of adults with FASD, a willingness to rethink previous training, and a willingness to modify expectations, systems, and the environment to meet the needs of adults with FASD are needed (Breen, 2002; Schmidt, 2005). A calm, nonjudgmental, adaptable, non-reactive, and empathetic approach is recommended, as are low staff-to-client ratios and the provision of adequate staff debriefing, supports, and resources (Grant et al., 2004). A willingness to involve and incorporate the individual and his/her family is also needed (Conry & Fast, 2000; Lutke & Antrobus, 2004). Proposed Integrated Intervention Model To summarize the overall predominant intervention and support themes that were identified in the literature, the researcher developed a conceptual intervention model shown in Figure 2. This model illustrates an integration of the overall key recommendations emerging from the composite empirical and anecdotal literature, thereby providing a potential framework from which to view and assess future interventions and supports. 128 Relationship Based Individual Person-Centred A \/ Strength and Compensatory Based Daily Living Supports (housing, m oney managem ent, day-to-day decisions, caregiver respite) Individual Goals Programming Supports (life skills, employment, vocational, parenting skills, social skills, recreation/leisure activities) Functional Assessment Coordination/ Advocacy Clinical Supports (social and justice services, medical and m ental health, therapeutic services, and crisis support) A Community Capacity Development \/ Long-term Continuum Model Professional Education & Diagnosis Figure 2 A Proposed Intervention Framework for Adults with FASD This intervention model is based on the knowledge that uniform or standardized approaches do not constitute best practices for FASD. Rather adults with FASD appear 129 to require a wide range of daily living, clinical support, and programming supports based on individual goals and functional abilities. As these needs are likely to vary throughout the lifespan, it is essential these supports remain individualized, person-centred, strength-based, and take place in the context of a long term, consistent relationship with the individual. Another integral component is the need for policies and practice, as well as professionals, communities, and ministries to recognize and understand the daily challenges and accomplishments encountered by adults with FASD. Therefore, the final framework component, community-capacity development, recognizes that for adults with FASD to meet greater success and community integration, there must be a change at the community or society level to understand, respect, and meet the needs of the individual with FASD. 130 Critical Summary Methodological Considerations This review indicates that studies of adults with FASD have been limited by relatively small, nonrandom, clinical samples predominantly drawn from one region in the United States. The lack of standardized tests, consistent diagnostic criteria and controls, inclusion of broad age ranges, and inadequate sample sizes limit the reliability and validity of extant research (Bookstein et al., 2002; Clark, Li, Conry et al., 2000; Clark et al., 2004; Famy et al., 1998; Kodituwakku et al., 2001; Riley et al., 2004; Streissguth et al., 2004). Clinical selection bias was also prevalent because the majority of studies drew from a clinical sample. These factors limit the generalizability of current research and suggest that research on adults with FASD must still be considered to be in the preliminary stages. Larger sample sizes, smaller age ranges, consistent measurement tools, and controls for confounding factors are needed before generalizations to the adult FASD population can be made. Further study is dependent on increased access to adult diagnosis. Until standardized approaches to adult diagnosis or screening are determined and barriers to diagnosis are reduced, the research results will be limited by this factor. Given the dearth of research on the adult FASD population, especially in terms of effective intervention strategies, ongoing research, and program evaluation should be considered critical. Stratton et al. (1996) recommend that program evaluation include two stages. The first stage is to test to see if the program improves the general performance of adults with FASD. If the strategy does appear to have potential, the second step is to define the specific elements of the program and how each function occurs before further testing proceeds. Program assessment needs to be able to delineate what specific aspects of function are affected and should assess if the effects persist over time. 131 Examples of rigorous study on other developmental disabilities may provide an excellent starting place for future methodological considerations (Stratton et al.). Study Strengths and Limitations The key strengths of this study are in its systematic and comprehensive assessment of the literature pertaining to adults with FASD. This was the first study to systematically assess the extant research on adults with FASD, and the first to focus on intervention and support recommendations for adults. The limitations of this study are related to the design and quality of literature assessed. These are considerably influenced by the variable quality and preliminary nature of the literature that was located. Having only one researcher was a further limitation as it increased room for interpretive error. Due to the lack of rigorous research, it was not possible to draw conclusions about the efficacy of documented interventions and supports. Instead this study was able to provide a potential framework or lens from which to design and evaluate further research. Areas for Further Study As a result of the relative lack of research on adults with FASD and interventions for adults with FASD, the possibilities for future research are virtually limitless and urgently needed. The following areas stand out as needing immediate attention; • development and evaluation of the effectiveness of interventions along the lifespan of individuals with FASD • development and evaluation of social skill development techniques for adults with FASD • development and evaluation of FASD professional education and how it affects policy, practice, or services for adults with FASD 132 • evaluation of the impact of specific environmental modifications on learning in adults with FASD • evaluation of the effectiveness of teaching intensive self-regulation skills on daily functioning for adults with FASD and their families • evaluation of efficacy of advocate support on daily functioning abilities for adults with FASD and their families • development and evaluation of supportive housing options for adults with FASD and the children they may have • description and assessment of sensory integration deficits in adults with FASD • evaluation of medication effects in adults with FASD • evaluation of legal competence of adults with FASD • development and evaluation of modified mental health andaddiction approaches • development and evaluation of instructional techniques for adults with FASD Further development in these areas may improve functional outcomes and positively impact the quality of life of adults with FASD. 133 Conclusions and Recommendations The composite literature reveals that adults with FASD display individualized profiles of strengths and deficits. However, many adults with FASD appear to struggle with lifelong learning, independent living, emotional functioning, employment, parenting, personal relationships, and social/recreational activities. Deficits in executive and adaptive function, in addition to high levels of mental illness, social disadvantage, and peer influence directly affect optimal outcomes for adults with FASD. Preliminary research indicates that the impacts of this disorder appear to be more significant in adulthood, as expectations increase but abilities do not. These are further complicated by assumptions, legal and otherwise, of independent function and a lack of recognition of this disability by government ministries responsible for handicapped adults. Adequate services are not readily available. In addition, preliminary results indicate that many adults with FASD may be unwilling to participate in the types of structure that best suit their needs. This review located four studies on interventions and supports for adults with FASD. These studies involved: functional assessment, advocacy or case management, professional education, community capacity development, and visual memory tools. Consequent analysis of this research provided limited reliable data from which to make recommendations regarding effective interventions and supports for adults with FASD. The majority of information was gathered from descriptive studies, experts, professionals, parents, and adults with FASD. What became evident was that research on this population is still in its preliminary stages and generalizations based on such fragmentary information need to be viewed with prudence. What also became evident was a synergy or consensus of information coming from across the divergent streams of literature. 134 Due to gaps and limitations of the current FASD intervention literature, the researcher was unable to formally evaluate the strength of intervention recommendations. Broad recommendations were formulated based on the common themes appearing in the reviewed material and the opinions and insight of the researcher. These recommendations are based on the most recent literature with the understanding that there is a pressing need for more research. They are based on the premise that adulthood represents one of the most challenging periods in the lifespan of individuals with FASD due to accentuated deficits in adaptive function combined with increasing mental and physical health needs. Based on this review the following recommendations are made. Recommendations for Policy 1. FASD is a unique lifelong disability that defies current definitions of what constitutes a developmental or intellectual disability. Formal health, legal, educational, and social ministry-level recognition of this lifelong disability and resulting informed policies, structures, and procedures need to be developed, as does a supported, systematic, and comprehensive research agenda. These changes need to be premised on the understanding that systems and society need to change to reflect and meet the needs of adults with FASD. 2. Access, eligibility requirements, and post-treatment planning need to be adapted to meet the needs of adults with FASD. Recommendations for Practice 1. Adults with FASD face unique challenges which are exacerbated by assumptions and legal expectations of independence. Traditional approaches may not be effective. Interventions and supports need to recognize that the provision of ongoing, intensive professional, emotional, and financial supports may be needed to ensure optimal function. This commitment to a compensatory and pragmatic support approach 135 needs to be lifelong and based on accurate functional assessments of individual strengths and needs. Adequate support is required to ensure adults with FASD live and meet success. 2. Adult diagnostic, assessment, and treatment services should be multidisciplinary in nature, publicly funded, and available at any age with or without confirmed prenatal alcohol exposure. Diagnoses and treatment should be linked to a national surveillance system which monitors both the occurrence of FASD and the effectiveness of intervention efforts. Diagnosis needs to be linked to interventions and support. Recognition of these diagnoses in the mental health diagnostic nomenclature is needed to garner appropriate attention. Effective therapy approaches need to be developed. 3. Interventions and supports should be based on the individual's realistic goals, involve his/her family and support network, and be culturally responsive. Potential multigenerational FASD impacts should be considered. 4. Interventions and supports should be coordinated and individualized. They need to consider the lived experiences as well as the unique cognitive and physical profiles of individuals. Recognizing the degree of diversity across adults with FASD and tailoring programs and supports to meet individual needs are essential. Consistency in service provision, service providers, and service setting, as well as the need to develop adequate social and advocate support networks should be considered. Daily living, clinical treatments, and programming supports may be required; therefore, an individualized wrap-around model of care should be considered. 5. Interventions and supports need to recognize and consider the impacts of adults with FASD on educational, medical, mental, legal, social, and employment systems. Adults with FASD usually need at least some ongoing support services, including supported living options, job training, and ongoing employment supervision. 136 supported social and recreational activities, parenting support, money and life management help, and positive role models. Increasing community supports to provide adequate assistance is critical to individual success and evidence indicates it is financially and socially cost-effective. 6. Motivation and relapse issues appear to be common in adults with FASD. To be effective, interventions and supports need the cooperation and collaboration of the individual. This can be a particularly challenging issue when working with adults with FASD. Peer and advocate support may play a critical role in forming relationships needed upon which to build interventions and supports. Susceptibility and vulnerability to friendships, living situations, and an often overwhelming need to belong should be considered. Provision of support workers and structured programming including leisure, social activities should be an integral component of wrap-around care. Traditional case management or coordination approaches will need to be modified to accommodate the cognitive and communication needs of adults with FASD. 7. Interventions and support approaches need to recognize that families, caregivers and professionals who are living or working with adults with FASD need adequate respite and supports. Families who are supporting adults with FASD need to be recognized and adequately supported both emotionally and financially. Professionals need flexibility, time and realistic workload expectations in order to provide meaningful and effective support. 8. The ability to learn and sustain needed skills is challenging for most adults with FASD; lifelong support is often required. Recommendations for Research and Knowledge Development 1. Anecdotal evidence and preliminary intervention studies have highlighted techniques which may result in positive outcomes for adults with FASD, such as reduced use of crisis, legal, and social services. Promising approaches include advocacy. 137 community capacity development, professional education, and outreach support. These ideas in combination with other suggestions found in evidence-based practice should be used as a basis from which to formally evaluate FASD interventions. 2. The needs of adults with FASD who have a support network and those who do not vary greatly, as do the needs of adults living in rural versus urban communities. Future research that delineates effective approaches between these sub-groups is needed and interventions and supports need to be designed accordingly. 3. Factors that contribute to resiliency and social functioning in adulthood need to be identified. 4. Training and educational opportunities need to be provided to individuals, caregivers, family, service providers, professionals, administrators, and the community. Educational information should provide insight into the nature of the disability and associated adulthood challenges, as well as assist in the development of appropriate expectations. Given the evolving state of knowledge in the field of FASD, ongoing professional growth and development needs to be mandated and supported. It is important to note that these recommendations are not intended to serve as solitary approaches to overcoming the gaps in the literature. Based on this review, a compensatory, comprehensive, and integrated intervention approach with active involvement of the individual, his/her support network, professionals, and the community is recommended. It is essential to recognize that positive outcomes for adults with FASD are possible and are increased through recognition, understanding, and adequate support. Modifications of environments, expectations, and treatment approaches are key components to optimal function in adults with FASD. 138 References Abraham, V. (2005). An investigation into the needs o f parents with Fetal Alcohol Spectrum Disorder (FASD). Unpublished master's thesis. University of Northern British Columbia, Prince George, British Columbia, Canada. Aronson, M. (1997). Children of alcoholic mothers: Results from Goteborg Sweden. In A.P. Streissguth & J. Kanter (Eds.). The challenge o f fetal alcohol syndrome: overcoming secondary disabilities (pp. 15-24j. Seattle, WA: University of Washington Press. Asante, K.O., & Nelms-Matzke, J. (1985). Report on the survey of children with chronic handicaps and Fetal Alcohol Syndrome in the Yukon and Northwest British Columbia. Terrace, BC: National Native Advisory Council on Alcohol and Drug Abuse. Abkarian, G.G. (1992). Communication effects of prenatal alcohol exposure. Journal o f Communication Disorders, 25(4), 221-240. Baer, J.S., Sampson, P.O., Barr, H.M., Connor, P., & Streissguth, A.P. (2003). A 21-year analysis of the effects of prenatal alcohol exposure on young adult drinking. Archives o f General Psychiatry, 60(4), 377-385. Baumbach, J. (2002). Some implications of prenatal alcohol exposure for the treatment of adolescents with sexual offending behaviours. Sexual Abuse; Journal of Research and Treatment, 14(4), 313-327. Baxter, B. (2005). Thoughts on FASD and language. The Canadian Association of Speech-Language Pathologists and Audiologists, 19(4), 5. Berg, S., Kinsey, K., Lutke, J., & Wheway, D. (1997). Dear world: We have fetal alcohol syndrome. Experience of young adults. Surrey, BC: FAS/E Support Network of BC. Bert, C.R., & Bert, M. (1992). Fetal alcohol syndrome in adolescents and adults. Miami, FL: Independent Native American Development Corp. (ERIC Document Reproduction Service No. ED351167) Boland, F.J., Chudley, A.E., & Grant, B.A. (2002). Challenge of fetal alcohol syndrome in adult offender populations. Forum on Corrections Research, 14(3), 61-64. Bookstein, F.L., Streissguth, A.P., Sampson, P.D., Connor, P.D., & Barr, H.M. (2002). Corpus callosum shape and neuropsychological deficits in adult males with heavy fetal alcohol exposure. Neuroimage, 15(1), 233-251. Breen, J. (2000). Creating vocational success for adults with fetal alcohol syndrome: The Yukon experience. Whitehorse, YK: The Muttart Foundation. Brock, S.R., (2000). An investigation of the long term neuropsychological outcome of prenatal teratogenic exposure: Fetal alcohol syndrome and maternal PKU syndrome. Dissertation Abstracts International: Section B: The sciences and engineering, Vol 60(7B), 1 139 Brownstone, L. (2005). Feasibility study into housing for people with FASD. Canadian National Homelessness Initiative for the Regina FASD Community Network, Saskatchewan Fetal Alcohol Support Network and Regina Community Clinic. Bryan, R. (2000). Education counselling and the cool Imperative: An IntegrativeInterpretive review. Unpublished master's thesis. University of Northern British Columbia, Prince George, British Columbia, Canada. Bund, L., Cotsonas-Hassler, T.M., Martsolf, J.T., & Kerbeshian, J. (2003). Recognition and management of fetal alcohol syndrome. Neurotoxicology & Teratogology, 25(6), 681-688. Chudley, A.E., Conry, J., Cook, J.L., Loock, C., Rosales, T., & LeBlanc, N. (2005). Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Journal of Canadian Medical Association, 172 (suppi 5). S1-S21. Chun, C.D., Streissguth, A.P., & Unis, A.S. (1999). Investigation of psychiatric profiles of adults with fetal alcohol syndrome/fetal alcohol effect. Journal o f Investigative Medicine, 47(2), 21 A. Church, M., Eldis, F., Blakley, B.W., & Bawle, E.V. (1997). Hearing, language, speech, vestibular, and dentofacial disorders in fetal alcohol syndrome. Alcoholism: Clinical & Experimental Research, 21(2), 227-237. Clark, C. M., Li, D., Conry, J., Conry, R., & Loock, C. (2000). Structural and functional brain integrity of fetal alcohol syndrome in nonretarded cases. Pediatrics, 105(5), 1096-1099. Clark, E. (2003). Community Integration and Independence among adults with fetal alcohol spectrum disorder In British Columbia. Unpublished Masters Thesis, Queen's University, Kingston, Ontario, Canada. Clark, E., Lutke, J., Minnes, P., & Ouellette-Kuntz, H. (2004). Secondary disabilities among adults with Fetal Alcohol Spectrum Disorder in British Columbia. Journal of FAS International, 2(13), 1-10. Coles, C.D. (2003). Individuals affected by fetal alcohol spectrum disorder (FASD) and their families: Prevention, intervention and support. In R. Tremblay, R. Barr, & R. Peters (Eds). Encyclopedia on Early Childhood Development [online]. Montreal, QB: Centre of Excellence for Early Childhood Education. Connor, P.D., Sampson, P.D., Bookstein, F.L., Barr, H.M., & Streissguth, A.P. (2000). Direct and indirect effects of prenatal alcohol damage on executive functioning. Developmental Neuropsychologla, 18(3), 331-354. Connor, P.O., Sampson. P.O., Streissguth, A.P., Bookstein, F.L., & Barr, H.M. (2005). Effects of prenatal alcohol exposure on fine motor coordination and balance: A study of two adult samples. Neuropsychologla, (in press). Connor, P.D., & Streissguth, A.P. (1996). Effects of prenatal alcohol across the lifespan. Alcohol Health & Research World, 20(3), 170-174. 140 Connor, P.D., Streissguth, A.P., & Sampson, P.O., Bookstein, F.L., & Barr, H.M. (1999). Individual differences in auditory and visual attention among fetal alcohol affected adults. Alcoholism: Clinical & Experimental Research, 23(8), 1395-1402. Conry, J., & Fast, D. (2000). Fetal alcohol syndrome and the criminal justice system. Vancouver, BC: British Columbia Fetal Alcohol Syndrome Resource Society. Cooper, H. (1982, March). Scientific guidelines for conducting Integrative literature reviews. Paper presented at the annual meeting of the American Educational Research Association, New York, NY. Cooper, H. (1985, March). A taxonomy o f literature reviews. Paper presented at the annual meeting of the American Educational Research Association, Chicago, IL. Cooper, H. (1998). Synthesizing research: A guide for literature reviews (3rd ed.). Thousand Oaks, CA: Sage. Cooper, H., & Hedges, L.V. (Eds.). (1994). The handbook o f research synthesis. New York: Russell Sage Foundation. Copeland, B. (2002). Searching for, finding and experiencing friendship: A qualitative study of friendship experiences of seven young adults with fetal alcohol syndrome/effects. Unpublished Masters Thesis. University of Victoria, Victoria, British Columbia, Canada. Copeland, B., & Rutman, D. (1996). Young adults with fetal alcohol syndrome or fetal alcohol effects: Experiences, needs and support strategies. Child, Family & Community Research Program. Victoria, BC: University of Victoria. DeVos, G. (2003). Women, justice and fetal alcohol syndrome & fetal alcohol effects: Defining the needs of the Elizabeth Fry Society to enhance work with women affected by FAS/E. Unpublished paper. University of Manitoba. Dorris, M. (1989). The Broken Cord. New York. Harper Perennial Dubenski, N. (1997). Working with FAS/E adults: Fifth in the series o f five booklets on fetal alcohol syndrome/effects. Regina, SK: The Family Support Group of the Committee on Alcohol and Pregnancy, and The Fetal Alcohol Support Network of Manitoba. Dubovsky, D. (1998, November), intervention techniques with adolescents and adults with FAS/FAE. Paper presented at the Finding Common Ground: Working Together for the Future Conference. Vancouver, BC. Dupius, C.A., & Urness, C. (2004). New perspectives on transition and Fetai Alcohol Spectrum Disorder: Shedding the light on transitioning issues with people who are affected by Fetai Alcohol Spectrum Disorder. Calgary, AB: Calgary Fetal Alcohol Network. Dyer, K., Alberts, G., & Niemann, G. (1997). Assessment and treatment of an adult with FAS: Neuropsychological and behavioral considerations. In A.P. Streissguth & J. Kanter (Eds.). The challenge o f fetai alcohol syndrome: overcoming secondary disabilities (pp. 52-63). Seattle, WA: University of Washington Press. 141 Eisenhart, M. (1998). On the subject of interpretive review. Review of Educational Research, 68(4), 391-399. Ellis, M.V. (1991). Conducting and reporting integrative research reviews: Accumulating scientific knowledge. Counselor Education & Supervision, 30(3), 11-35. Ernst, C.C., Grant, T.M., Streissguth, A.P., & Sampson, P.O. (1999). Intervention with high-risk alcohol and drug abusing mothers: II Three-year results from the Seattle model of paraprofessional advocacy. Journal of Community Psychology, 27(1), 19-38. Famy, C., Streissguth, A.P., & Unis, A.S. (1998). Mental illness in adults with fetal alcohol syndrome or fetal alcohol effects. American Journal o f Psychiatry, 155(4), 552-554. FAS/E Support Network. (1990). Understanding and working with Fetal Alcohol Syndrome and Fetal Alcohol Effects. Surrey, BC: FAS/E Support Network. FAS/E Support Network. (1995). Neurobehaviour in adolescents and adults. Surrey, BC: FAS/E Support Network. Fetal Alcohol Syndrome Society of Yukon (2003). Trying differently: Enabling adults with FAS to succeed in their community. Whitehorse, YK: Breen and Associates Consulting Co. Gibson, A. (2003). Best practices ideas across five aspects o f transitions among youth with FASD lives. Calgary, AB: Calgary Fetal Alcohol Network. Goodlett, C.R., & Horn, K.H. (2001) Mechanisms of alcohol-induced damage to the developing nervous system. Alcohol Research and Health, 25(3), 175-184. Graefe, S. (2003). Living with FASD: A guide for parents. Vancouver, BC: Ben Simon Press. Grant, T., Ernst, C., Streissguth, A.P., & Porter, J. (1997). An advocacy program for a mother with FAS. In A.P. Streissguth & J. Kanter (Eds.). The challenge o f fetal alcohol syndrome: Overcoming secondary disabilities (pp. 102-112/ Seattle, WA: University of Washington Press. Grant, T., Huggins, J., Connor, P., & Streissguth, A. (2005). Quality of life and psychosocial profile among young women with fetal alcohol spectrum disorders. Mental Health Aspects o f Developmental Disabilities, 8(2), 33-39. Grant, T., Huggins, J., Connor, P., Pedersen, J.Y., Whitney, N., & Streissguth, A. (2004). A pilot community intervention program for young women with fetal alcohol spectrum disorders. Community Mental Health Journal, 49(6), 499-511. Griesbach, L.S., & Polloway, E.A. (1990) Fetal alcohol syndrome: Research review and implications. Lynchburg, VA: School of Education and Human Development Lynchburg College. (ERIC Document Reproduction Service No. ED326035) Hancock, R. (2004). Prevalence of Fetal Alcohol Syndrome in a remote region of Australia. Journal of FAS International, 2(5), 1-3. 142 Hart, M.A. (1997). Support for First Nations to address fetal alcohol syndrome and effects. In J. Turpin & G. Schmidt (Eds.), Fetal Alcohol Syndrome/Effect: Developing a Community Response (pp. 73-79). Halifax, NS; Fernwood Publishing. Health Canada. (2003). Fetal alcohol spectrum disorder (FASD); A framework for action. Ottawa, ON: Health Canada. Hess, J., & Niemann, G.W. (1997). Residential programs for persons with FAS: Programming and economics. In A.P. Streissguth & J. Kanter (Eds.). The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 52-63). Seattle, WA: University of Washington Press. Hume, S., Rutman, D., Hubberstey, L., & MacFeeters, L. (2005). "With a iittie heip from my friends": Second interim outcome evaiuation report. Ottawa, ON: National Crime Prevention Centre (Contract No. 4500035837). Jones, K.L., & Smith, D.W. (1973). Recognition of the fetal alcohol syndrome in early infancy. Lancet, 2, 999-1001. Kacki, D. (2004). Voices from the field - reflections on practice in the field of FASD. In R. Tremblay, R. Barr, & R. Peters (Eds). Encyclopedia on Early Childhood Development [online]. Montreal, QB: Centre of Excellence for Early Childhood Education. Kelly, S.J., Day, N., & Streissguth, A.P. (2000). Effects of prenatal alcohol exposure on social behavior in humans and other species. Neurotoxicology & Teratology, 22(2), 143-149. Kerns, K.A., Don, A., Mateer, C.A., & Streissguth, A.P. (1997). Cognitive deficits in nonretarded adults with Fetal Alcohol Syndrome. Journal of Learning Disabilities, 30(6), 685-693. Kleinfeld, J., Morse, B., & Wescott, S. (Eds.). (2000). Fantastic Antone grov/s up: Adoiescents and aduits with fetal alcohol syndrome. Fairbanks, AK: University of Alaska Press. Kodituwakku, P.W., Kalberg, W., & May, P.A. (2001). The effects of prenatal alcohol exposure on executive functioning. Alcohol: Research & Flealth, 25(3), 192-198. Kodituwakku, P.W., May, P.A., Clericuzio, C.L., & Weers, D. (2001). Emotionrelated learning in individuals prenatally exposed to alcohol: An investigation of the relation between set shifting, extinction of responses, and behavior. Neuropsychologia, 39(7), 699-708. Kopera-Frye, K., Dehaene, S., & Streissguth, A.P. (1996). Impairments in number processing induced by prenatal alcohol exposure, Neuropsychologia, 34(12), 1187-1196. Kyffin, J., Richmond, J., & Yakel, C. (May, 2005). Community inclusion program: Project report. Cowichan Valley FAS Action Team Society. LaBerge, C. (2004). Manitoba FASD community mobilization: Project evaluation. Winnipeg, MN: Association for Community Living Manitoba. 143 LaDue, R. (1993). Psychosocial needs associated with fetal alcohol syndrome: Practical guidelines for parents and caretakers. University of Washington, School of Medicine, CG-20. LaDue, R.A. (2002). A practical Native American guide for caregivers, adoiescents and aduits with fetal alcohol syndrome and alcohol related conditions. Rockville: MD, Indian Health Service. LaDue, R.A., Schacht, R.M., Tanner-Halverson, P., & McGowan, M. (1999). Fetal alcohol syndrome: A training manual to aid vocational rehabilitation and other nonmedicai services. Flagstaff, AZ: American Indian Rehabilitation Research and Training Centre. LaDue, R.A., Streissguth, A.P., & Randels, S.P. (1992). Clinical considerations pertaining to adolescents and adults with fetal alcohol syndrome. In I . P. Sonderegger (Ed.). Perinatal substance abuse (pp. 104-131). Baltimore, ML: The John Hopkins University Press. LaPorte, A., McKee, T., Lisakowski, Z., Chudley, A., & Conry, J. (2002). Fetal alcohol spectrum disorder: FASD guidebook forpoiice officers. Ottawa, ON: Royal Canadian Mounted Police. Lemoine, P., Harousseau, H., Borteyru, J.P., & Menuet, J.C. (1968). Les enfants de parents alcooliques - anomalies observées: a propos de 127 cas [Children of alcoholic parents; Abnormalities observed in 127 cases]. Quest Medical, 21, 467-482. Lemoine, P., & Lemoine, P.H. (1992). Outcomes in the offspring of alcoholic mothers (study of 105 adults) and considerations with a view to prophylaxis, [abstract]. Annales de Pedlatre, 39, 226-235. Little, B., Snell, M., Rosenfeld, C., Gilstrap, L., & Grant, N. (1990). Failure to recognize Fetal Alcohol Syndrome in newborn babies. American Journal of Diseases of Children, 144, 1142-1146. Lohr, J.B., & Bracha, H.S. (1989). Can schizophrenia be related to prenatal exposure to alcohol? Some speculations. Schizophrenia Bulletin, 15, 222-228. Loock, C., Conry, J., Cook, J. L. Chudley, A.E., & Rosales, T. (2005). Identifying fetal alcohol spectrum disorder in primary care. Journal o f Canadian Medical Association, 172 (5), 628-630. Loock, C., & Clarren, S. (2004, March). It's not magic: The science o f determining FASD in adults. Paper presented at the Adults with Fetal Alcohol Spectrum Disorders: Swimming Upstream Conference. Vancouver, BC. Loser, H., Bierstedt, T., & Blum, A. (1999). Aljoholembropathies im Erwachsenenalter: Eine Langzeituntersuchung (Fetal alcohol syndrome in adulthood. A long term study). Dtsch Med Wochenschr, 124(14), 412-418. Lutke, J. (1993). Fetal alcohol syndrome/effects: Working with aduits Neurobehavioral manifestations. Surrey, BC: FAS/E Support Network. 144 Lutke, J., & Antrobus, T. (2004). Fighting for a future: FASD and 'the system'; Adolescents, adults and their families and the state of affairs. Vancouver, BC: Connections: Serving Adolescents and Adults with FASD. Lyon, G.R., & Krasnegor, N.A. (1996). Attention, memory and executive function. Baltimore, MA: P.H. Brookes Publishing Company. Lyons, S. (2004). Fetai alcohoi spectrum disorder: Finding aiternatives, solutions and directions. Yorkton, SK: Parkland Regional College. Maguire, D. (2004). Voices from the field - An Aboriginal view on FAS/FAE. In R. Tremblay, R. Barr, & R. Peters (Eds). Encyclopedia on Early Childhood Development [online]. Montreal, QB: Centre of Excellence for Early Childhood Education. Malbin, D. (2002). Fetal alcohol spectrum disorders: Trying differently rather than harder {2nd ed.). Portland, OR: Tectrice Inc. Massey, V.J. (1997). Listening to the voiceless ones: Women with fetal alcohol syndrome and fetal alcohol effect. (Doctoral dissertation. University of Alberta, 1997). Dissertation Abstracts International, 58, 9-B Massotti, P. Szala-Meneok, K., Selby, P., Ranford, J., & VanKoughnett, A. (2003). Urban FASD interventions: Bridging the cultural gap between Aboriginal women and primary care. Journal of FAS International, 1(e17), 1-8. Mattson, S.N., & Riley, E.P. (1997). Neurobehavioral and neuroanatomical effects of heavy prenatal exposure to alcohol. In A. P. Streissguth & J. Kanter (Eds.), The challenge o f Fetal Alcohol Syndrome: Overcoming secondary disabilities (p. 3-14). Seattle, WA: University of Washington Press. Mattson, S.N., Schoenfeld, A.M., & Riley, E.P. (2001). Teratogenic effects of alcohol on brain and behavior. Alcohol Research and Health, 25(3), 185-191. Mauch, J.E., & Park, N. (2003). Guide to the successful thesis and dissertation: A handbook for students and faculty (5 th ed.). New York: Marcel Dekker Inc. May, P.A., & Gossage, J.P. (2001). Estimating the prevalence o f fetal alcohol syndrome. 25(3), 159-167. Meacham, S. J. (1998). Threads of a new language: A response to Eisenhart's “On the subject of interpretive review’. Review o f Educational Research, 68(4), 401-407. Michaud, M.A., & Michaud, S.K. (2003). Beautiful smiles, gentle spirits: Fetal alcohol spectrum disorder a misunderstood problem. Edmonton, AB: Detselig Enterprises. Mitten, R.H., (2003). Barriers to implementing holistic, community-based treatment for offenders with fetal alcohol conditions. Doctoral Thesis, Department of Law, University of Saskatoon, Canada. Monnot, M., Nixon, S., Lovallo, W., & Ross, E. (1999). Altered emotional perception in alcoholics: Deficits in affective prosody comprehension. Alcoholism: Clinical & Experimental Research, 25(3), 362-369. 145 Monnot, M., Nixon, S., Lovallo, W., & Ross, E. (2002). Neurological basis of deficits in affective prosody comprehension among alcoholics and fetal alcohol exposed adults. Journal o f Neuropsychiatry & Clinical Neuroscience, 14(2), 321-328. Moore, T.E., & Green, M. (2004). Fetal alcohol spectrum disorder (FASD): A need for closer examination by the criminal justice system. Criminal Reports, 19(1), 99108. Nanson, J., & Brock, 8. (2000). Adult outcomes in FAS: Education, employment and attention. Retrieved Oct. 5, 2005, from http:www.motherisk.org/updates/fall00.php3. National Homelessness Initiative. (2003). Westcoast Genesis Society's community residential and reintegration program for adult male offenders with fetai aicohoi spectrum disorder (FASD): Promising approaches to transition & supportive housing. Ottawa, ON: Government of Canada. Niccols, G.A. (1994). Fetal alcohol syndrome: Implications for psychologists. Clinical Psychology Review, 14(2), 91-111. Novick, N.J., & Streissguth, A. (1996). Part 2: Thoughts on treatment of adults and adolescents impaired by fetal alcohol exposure. Treatment Today, 7(3), 20-21. O'Malley, K. (2000). Update on the role of medication in treating patients with FASD. iceberg, 10(3), 58-59. Ontario Federation of Indian Friendship Centres. (2002). Aboriginal approaches to fetai aicohoi syndrome/effects. Toronto, ON: Author. Options for Independence. (2003). Options for independence. Ottawa, ON: Government of Canada. Ory, N. E. (2004, March). Why aduits with FASD don't "get better": Subtle, thinking handicaps, dependent functioning and maladaptive coping skills. What you see is not what you get. Paper presented at the Adults with Fetal Alcohol Spectrum Disorders: Swimming Upstream Conference. Vancouver, BC. Porter, U.K., Streissguth, A.P., & Barr, H.M. (1997). A descriptive study of patients with fetal alcohol syndrome and fetal alcohol effects who have become parents. Journal o f investigative Medicine, 45(1). Premji, S., Serrett, K., Benzies, K., & Hayden (November, 2004). The state of evidence review: interventions for children and youth with a Fetai Aicohoi Spectrum Disorder (FASD). Calgary, AB: Alberta Centre for Child, Family and Community Research. Raymond, M., & Belanger, J. (2000). Literacy based supports for young aduits with FAS/E. National Literacy Secretariat, Project Number 1999/00-SL-5/S2. Rice, K.S. (1992). Behavioral aspects of fetal alcohol syndrome. DesMoines, lA: Mountain Plains Information Bulletin. Riley, E.P., McKee, C.L., & Sowell, E.R. (2004). Teratogenic effects of alcohol: A decade of brain imaging, American Journal of Medical Genetics, Part C, Seminars in medical genetics, 127(1), 35-41. 146 Riley, E.P., Thomas, J.D., Goodlett, C.R., Klintsova, A.Y., Greenough, W.T., Hungund, B.L., Zhou, F., Sari, Y., Powrozek, T., & Li, T.K. (2001). Fetal alcohol effects: Mechanisms and treatment. Alcoholism: Clinical & Experimental Research, 25, 110s116s. Roberts, G., & Nanson, J. (2000). Best practices: Fetal alcohol syndrome/Fetal alcohol effects and the effects of other substance use during pregnancy. Ottawa, ON: Health Canada. Robinson, G.C., Conry, J.L., & Conry, R.F. (1987). Clinical profile and prevalence of Fetal Alcohol Syndrome in an isolated community in British Columbia. Canadian Medical Association Journal, 137, 203-207. Russell, D.L. (2002). IQ-lt just doesn't matter: The role of adaptive functioning in individuals with FAS/FAE/ARND. Unpublished paper. Rutman, D., LaBerge, C., & Wheway, D. (2002). Adults living with FAS/E: Experiences and support issues in British Columbia. Surrey, BC: FAS/E Support Network of BC. Rutman, D., LaBerge, C., & Wheway, D. (2005). Parenting with FASD: Challenges, strategies, and supports: A research and video production project. Surrey, BC: FAS/E Support Network of BC. Schmidt, L. (2005). The Focus Program: A vocational program for adults with FASD. Unpublished book, obtained from author. Schmucker, C. (1997). Case managers and independent living instructors: Practical hints and suggestions for adults with FAS. In A. P. Streissguth & J. Kanter (Eds.), The challenge o f Fetal Alcohol Syndrome: Overcoming secondary disabilities (pp. 96-101). Seattle, WA: University of Washington Press. Schwandt T.A. (1998). The interpretive review of educational matters: Is there any other kind? Review o f Educational Research, 68(4), 409-412. Sokol, J.S., Delaney-Black, W., & Nordstrom, B. (2003). Fetal alcohol spectrum disorder. Journal o f American Medical Association, 290(22), 2996-2999. Statistics Canada (2001). Population and dwelling counts for Canada, Provinces and Territories, 2001 Census. Statistics Canada. Stratton, K., Howe, C., & Battaglia, F.B. (Eds.). (1996). Fetal alcohol syndrome: Diagnosis, epidemiology, prevention and treatment. Washington, DC: National Academy Press. Steinhausen, H.C., & Spohr, H.L. (1998). Long-term outcomes of children with fetal alcohol syndrome: Psychopathology, behavior, and intelligence. Alcoholism Clinical and Experimental Research, (22), 334-338. Streissguth, A.P. (1993). Fetal alcohol syndrome in older patients. Alcohol and Alcoholism Supplement, 2, 209-212. 147 Streissguth, A.P. (1994). A long-term perspective of FAS. Alcohol Health and Research World, 18(1), 74-81. Streissguth, A.P. (1997). Fetal alcohol syndrome: A guide for familles and communities. Baltimore, MA: Paul H. Brookes Publishing Co. Streissguth, A.P., Aase, J.M., Clarren, S.K., Randels, S.P., LaDue, R.A., & Smith, O.P. (1991). Fetal alcohol syndrome in adolescents and adults. Journal of American Medical Association, 265, 1961-1967. Streissguth, A.P., Barr, H.M., Kogan, J., & Bookstein, F.L. (1996). Understanding the occurrence o f secondary disabilities in clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Seattle, WA: University of Washington School of Medicine. Grant No. R04/CCR008515. Striessguth, A.P., Bookstein, F.L, Barr, H.M., Sampson, P.O., O'Malley, K., & Young, U.K. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developing Behavior Pediatrics, 25(4), 228-238. Streissguth, A.P., Herman, C.S., & Smith, D.W. (1978). Intelligence, behavior, and dysmorphogenesis in fetal alcohol syndrome: A report on 20 patients. Journal of Pediatrics, 92(2), 363-367. Streissguth, A.P., & Kanter, J. (Eds.). (1997). The challenge o f fetal alcohol syndrome: Overcoming secondary disabilities. Seattle, WA: University of Washington Press. Streissguth, A.P., LaDue, R.A., & Randels, S.P. (1988). A manual on adolescents and adults with fetai aicohoi syndrome with special reference to American Indians (Indian Health Services No. 240-83-0035, 243-88-0166). Rockville, ML: US Department of Health and Human Services. Indian Health Service. Streissguth, A.P., Moon-Jordan, A., & Clarren, S.K. (1995). Alcoholism in four patients with fetal alcohol syndrome: Recommendations for treatment. Alcoholism Treatment Quarterly, 13(2), 89-103. Streissguth, A.P., & O'Malley, K. (1997). Fetal alcohol syndrome/fetal alcohol effects: Secondary disabilities and mental health approaches. Treatment Today, 9(2), 16-17. Streissguth, A.P., & O'Malley, K. (2000). Neuropsychiatrie implications and long­ term consequences of fetal alcohol spectrum disorders. Seminars in Clinical Neuropsychiatry, 5, 177-190. Streissguth, A.P., Randels, S.P., & Smith, P.D. (1991 ). A test re-test study of intelligence in patients with fetal alcohol syndrome: Implications for care. Journal o f the American Academy of Child and Adolescent Psychiatry, 30(4), 584-587. Suri, H. (2002, April). Essential features of methodologically inclusive research synthesis. Paper presented at the annual meeting of the American Educational Research Association. New Orleans, LA. 148 Trudeau, D. (2002). Trying differently: A guide for daily living and working with FAS and other brain differences. Whitehorse, YK; Fetal Alcohol Society Yukon. Turpin, J., & Schmidt, G. (1999). Fetal Alcohol Syndrome/Effect: Developing a community response. Halifax, NS: Fernwood Publishing. Warren, K.R., & Foundin, L.L. (2001). Alcohol-related birth defects: The past, present and future. Alcohol Research and Health, 25(3), 153-158. Wideen, M.F., Mayer-Smith, J.A., & Moon, B.J. (1998). A critical analysis of the research on learning to teach: Making the case for an ecological perspective on inquiry. Review o f Educational Research, 68(2), 130-178. Williams, R.J., Odaibo, F., & McGee, J.M. (1999). Incidence of Fetal Alcohol Syndrome in Northeastern Manitoba. Canadian Journal o f Public Health, 90(3), 192-195. Woodworth, C. (2005). Fetal alcohol syndrome and its effects on speech and language. The Canadian Association o f Speech-Language Pathologists and Audiologists, 19(4), 4. Up North Training Services. (2002). Structural barriers to independent living for adults with fetal alcohol syndrome and reducing homelessness after incarceration. Ottawa, ON: Consulting and Audit Canada. Yates, W.R., Cadoret, R.J., Troughton, E.P., Stewart, M., & Giunta, T.S. (1998). Effect of fetal alcohol exposure on adult symptoms of nicotine, alcohol and drug independence. Alcoholism: Clinical & Experimental Research, 22(4), 914-920. 149 APPENDICES Appendix A: Search Criteria The following criteria were used to screen for literature that will be included in study. Methodology, outcomes and article quality will not be examined in search process. Criteria Population Date of publication Resource Data Focus Keywords - Search Concept A FASD and equivalents Keywords - Search Concept B intervention and equivalents Details Human 18 years and older or defined as adult by study Prenatal alcohol exposure diagnosis or evidence of FASD 1973 to present Literature must describe/detail/discuss adults with FASD and/or a program in its broadest sense. Includes: Intervention Strategies Education Medication Developed keyword matrix using database thesaurus combined with cited nomenclature. - fetal alcohol spectrum disorder or FASD - fetal alcohol syndrome or FAS fetal alcohol effects or FAE partial fetal alcohol syndrome or PFAS alcohol related neurodevelopmental disorder or ARND prenatal exposure to alcohol - prenatal exposure to (drugs or ethanol) drug induced congenital disorder Developed keyword matrix using database thesaurus combined with cited nomenclature, intervention - program - strategies - training education behaviour modification - therapy - treatment rehabilitation management advocacy 150 Appendix B: Databases and Websites The following databases and websites were systematically searched using the search criteria developed for this study which focused on interventions for FASD. Databases searched Database National Database of FASD and Substance Use During Pregnancy Date last searched June 2005 CHINAL* Cumulative Index of Nursing and Allied Health Literature June 2005 ERIC* Educational Resource Information Center August 2005 ETON Alcohol and alcohol Problems Science Database July 2005 Medline* August 2005 Database description Database of Canadian resources that have been authored, produced or published in Canada and are currently available to be ordered or purchased from the organization responsible. The subject areas from which documents are selected include prevention, intervention and identification of FASD and other perinatal substance abuse exposures. Resources from 1996 to present. CHINAL is the authoritative resource for nursing and allied health professionals, students, educators and researchers. This database provides indexing for 2,719 journals from the fields of nursing and allied health. This database contains more than 1,000,000 records dating back to 1982. ERIC contains more than 2,200 digests along with references for additional information and citations and abstracts from over 1,000 educational and education-related journals. Records date back to 1982. Database of historic alcohol-related research information. Produced by the National Institute on Alcohol Abuse and Alcoholism (NIAAA). ETOH contains over 130,000 records and covers the period from 1972 to 2003 Covers international literature on biomedicine, including the allied health fields and the biological and physical sciences, humanities and information science as they relate to medicine and health care. 151 PsyclNFO* SAMSHA August 2005 Substance abuse and mental health services administration August 2005 PsyclNFO contains more than 2 million citations and summaries of scholarly journal articles, book chapters, books and dissertations, all in psychology and related disciplines, dating as far back as the 1880s. 97% of material covered is peer reviewed. Journal coverage, which spans 1887 to present, includes international material selected from nearly 2,000 periodicals in more than 25 languages. SAMSHA Fetal Alcohol Spectrum Disorders (FASD) Centre for excellence has sorted through thousands of journal articles, reports, books, news stories, and other publications and synthesized them. * peer reviewed databases Note: descriptions taken from EBSCO definitions or from database site 152 Websites searched Site URL Government of Canada: Canadian Centre htto://www.ccsa.ca on Substance Abuse National Institutes of Health: National htto://www.niaaa.nih.aov Institute on Alcohol Abuse and Alcoholism US Department of Health and Human httD://www.cdc.QOv/ncbdd/fas/ Services: Centers for Disease Control and Prevention, National center on Birth Defects and Developmental Disabilities US Department of Health and Human httD://www.fascenter.samsha.QOV Services: Substance Abuse and Mental Health Services Administration: SAMSHA Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence Asante Centre for Fetal Alcohol Syndrome htto://www.asantecentre.ora Connections: Serving Adolescents and htto://www.fasdconnections.ca Adults with FASD (Canada) FAS/E Support Network of BC htto://www.fetalalcohol.com Fetal Alcohol and Drug Unit, University of htto://www.deots.washinaton.edu/fadu Washington, School of Medicine, Department of Psychiatry and Behavioral Sciences FASworld Canada htto://www.fasworld.com Minnesota Organization on Fetal Alcohol htto://www.mofas.ora Syndrome (MOFAS) National Organization on Fetal Alcohol htto://www.nofas.ora Syndrome Northern Family Health Society: Prince htto://www.nfhs-Da.ora George Saskatchewan Fetal Alcohol Support htto://www.skfasnetwork.ca Network Calgary Fetal Alcohol Network htto://www/calaarvfasd.com htto://www/fasbookshelf.com FAS Bookshelf Centre of Excellence for Early Childhood httD://www.excellence-earlvchildhood.ca Development Note: websites searched recommended by University o f Washington, July, 2005, other links originated from article references and from within the websites themselves. 153 Appendix C: Data Extraction Form This form was used to collect data regarding efficacy or recommendations of interventions for adults with FASD. Part One: Selection for Inclusion Date Database Source Reference information (APA Format) Selection criterion A Target population prenatally exposed to alcohol? Yes No Selection Criterion B Target population adults (18 years and older)? Yes No Article applicable to study? Yes No If yes, obtain full article: 1. Article includes empirical evaluation of intervention(s) 2. Article includes recommendations of intervention(s) 3. Article is primary source scientific FASD adult characteristic study 4. Article is primary source descriptive study (qualitative study of adults with FASD) 5. Article is primary source longitudinal study on adults with FASD 6. Article provides key background information, discussions or descriptions 7. Other: Data Focus: □ Intervention □ Strategies □ Management □ Program □ Outcome/Descriptive Notes: 154 Part Two - Critique and Anaiysis of Literature (to be filled out for all articles/literature that meet inclusion criteria, information collected from full article) □ Stream I • Evidence based on randomized controlled trials of adequate size • Evidence based on randomized controlled trials of small sample size • Evidence based on non randomized, controlled, clinical or case studies □ Stream II • Evidence based on opinion and/or practice of respected authorities or expert committee • Evidence based on opinion and/or practice of expert or the wisdom or experiences of others in the field of FASD Citation Type: □ □ □ □ □ □ □ Published peer reviewed Published non-peer reviewed Government/Technical report Book/Book Chapter Agency Report Conference proceedings/papers O ther:____________________________________________________________ Type of Literature: □ Research Study - Empirical □ Opinion or commentary □ Program report □ Literature review Other:___________________________________________________________ Describe article: Include major tenets. Be as specific as possible and use author words, descriptions.________________________________________________________________ Purpose: Population studied: Method used: Strengths of article: Weaknesses of article: Brief Description: Intervention Results: Description of FASD in adults: Other: Quotes: 155 Part Three: Analysis of Intervention Studies To be filled out for only those articles that empirically evaluated or assessed interventions. (Looking for randomization, blinding of intervention, complete follow-up, and blinding of outcome measurement) SAMPLE INFORMATION: Target population of the intervention? □ FASD Individuals □ Parents/caregivers of FASD □ Professionals working with individuals □ Community □ Entire Program □ Other, specify:_______________________________________________ Details of target population: Age: □ 18 yrs and older □ not specified Sex: □ □ □ □ Male Female Both Not specified Specific Diagnosis: □ FAS □ FAE □ FASD □ ARND □ PFAS □ Specific diagnosis not provided □ Other, specify:______________ How sample selected: □ Random □ Purposive □ Non random, specify: □ Not specified Sample size: □ Specified: □ Not specified Ethnicity of sample: □ White □ Aboriginal □ Black 156 □ □ Other, specify; Not specified Socioeconomic status/information provided: □ Yes If yes, specify:_____________ □ No INTERVENTION DESCRIPTION: Did intervention have a title? □ Yes If yes, specify:__________ □ No Location intervention(s) delivered? □ Specified:____ □ Not specified What was the population density of intervention location? □ Urban □ Rural □ Suburban □ First Nations reserve □ Mixed □ Not specified Where was the intervention delivered? □ Clinic setting □ Home-based setting □ Service based setting (e.g. public health facility, justice facility, hospital) If yes, specify:___________________________________________________ □ Reserve □ Work site □ Other, specify:___________________________________________________ □ Not specified Who or what type of agency/organization providing intervention? □ Specify:________________________________________________________ □ Not specified IN T E R V E N T IO N S P E C IF IC S ; Does article state if intervention had been previously used with adults with FASD? □ Yes □ No □ Used in other populations, specify:__________________________________ 157 Identify and describe each intervention (Use terms/descriptors used by authors. Be as specific as possible): Intervention 1 Intervention 2 Intervention 3 Intervention 4 Intervention 5: Frequency of intervention: □ Daily □ Weekly □ Bi-weekly □ Monthly □ Irregular □ Not specified □ Other, specify: Duration of intervention: □ Specify: □ Not specified What services were delivered? (check all that apply) □ Individual Advocacy (i.e. practical support for a variety of issues facing individual finding daycare, housing, court or other services interpretations, etc. as identified by the individual) □ Parenting program □ Social skills development □ Job coaching □ Supported housing □ Resource information □ Substance abuse treatment □ Vocational training □ Education about FASD, developmental implications □ Other, specify:________________________________________________________ Who delivered the intervention(s)? □ Specify:_____________________________________________________________ □ Not specified How were they trained? □ Specify:_____________________________________________________________ □ Not specified How many participants exposed to intervention? □ Specify:_____________________ □ Not specified 158 How many participants completed the intervention? □ Specify:________ _____ _______ □ Not specified How was the intervention assessed? (be as specific as possible) □ Specify:_________________________________________ □ Not specified Who did the intervention assessment? □ □ Specify:_________________________________________ Not specified Blinding of randomization? Yes No Blinding of intervention? Yes No Complete follow-up? Yes No Blinding of outcome measurement? Yes No □ This paper does not empirically evaluate efficacy of intervention Specify: □ This paper does empirically evaluate efficacy of intervention Specify:___________________________________________________ MAIN RESULTS: What were the main results: □ Primary results, specify: □ Secondary results, specify: □ Other results □ Not specified