GIFTS, TALENTS AND CHALLENGES: UNTAPPED POTENTIAL OF ADULTS WITH FASD Katherine Harriman BSW, University of Northern British Columbia, 1999 Thesis Submitted in Partial Fulfillment of The Requirements for the Degree of Master of Social Work The University of Northern British Columbia July, 2007 Katherine Harriman, 2007 1*1 Library and Archives Canada Bibliotheque et Archives Canada Published Heritage Branch Direction du Patrimoine de I'edition 395 Wellington Street Ottawa ON K1A0N4 Canada 395, rue Wellington Ottawa ON K1A0N4 Canada Your file Votre reference ISBN: 978-0-494-48834-8 Our file Notre reference ISBN: 978-0-494-48834-8 NOTICE: The author has granted a nonexclusive 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 noncommercial purposes, in microform, paper, electronic and/or any other formats. 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Conformement a la loi canadienne sur la protection de la vie privee, quelques formulaires secondaires ont ete enleves de cette these. 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 Gifts, Talents and Challenges - Adults with FASD i Abstract: Adults with Fetal Alcohol Spectrum Disorder may be viewed through a deficit lens that does not include strengths and abilities. Yet, adults with FASD do have strengths and untapped potential, just as every other person does. This qualitative descriptive research study includes challenges, barriers and needs, along with the gifts and talents of adults with FASD as perceived by their mothers, care providers, service providers and by themselves. Strengths unique to each individual included a willingness to please, connection to others, being non-judgmental and supportive towards others, along with their ability to survive and adapt. Challenges included the invisibility of FASD and the lack of awareness that although this condition lasts a lifetime, much can be done to improve the lives of these individuals through providing proper identification, education and supports. Identified needs are specialized environments in schools, financial assistance based on adaptive functioning instead of an IQ score, supportive housing and specialized vocational training, resulting in supportive employment. This research is important because a strengths based perspective provides a more accurate and balanced picture of adults with FASD and may facilitate a person-centered, comprehensive approach to service provision. Gifts, Talents and Challenges - Adults with FASD ii TABLE OF CONTENTS Abstract Table of Contents ii Acknowledgments V Dedication vi Chapter One Introduction My Standpoint Societal Context - Lack of Services A More In-Depth Examination of Service Provision Cultural Context Individual Responsibility 1 5 9 11 13 14 Chapter Two Review of the Literature / Definition of FASD Children with FASD FASD in Adults Secondary Disabilities Intelligence Quotient Score and Adaptive Functioning Benefits of Early Identification Access to Early Identification FASD - A Northern Focus Involvement of the Justice System Needs of Families Need for Research and Policy Change Unrecognized Strengths and Abilities Benefits of Strengths - Based Approach Need for an Attitudinal Shift 15 16 17 18 20 Chapter Three Focus of this Research Statement of the Research Inquiry Theoretical Perspective 34 34 34 Chapter Four Methodology / Qualitative Research Qualitative Descriptive Research Need for Rigor Participants Research Method Data Analysis Ethical Considerations 40 41 42 43 45 46 48 22 24 24 25 27 28 28 31 32 Gifts, Talents and Challenges - Adults with FASD Hi Chapter Five Results of the Interviews 50 Barriers Experienced by Adults with FASD 50 Views of Adults with FASD 51 Problems Within the School System 51 Secondary Disabilities 53 Need for Supported Employment 55 Lack of Diagnosis and Recognition of FASD 56 Manifestations of FASD / Need for Advocacy 57 Views of Care Providers 58 Inadequate or Non-existent Support Systems 61 Secondary Disabilities - Care Providers 67 Need for Supported Employment - Care Providers 69 Lack of Identification and Understanding 69 Pejorative Labels 72 Inability to Advocate / Expectation of Competency 73 Needs of Adults with FASD 76 Views of Adults with FASD 76 Changes in Perception 76 Education and Understanding 78 Diagnostic and Assessment Services 79 Specialized Education / Supportive Employment 80 Addictions Treatment and Medications 82 Views of Care Providers 82 Changes in Perception - Care Providers 83 Support Services 83 School System 85 Education and Understanding - Care Providers 89 Altered Expectations 90 Diagnostic/Assessment Services - Care Providers 92 Healthy Support Systems / Paradigm Shift 94 Specialized Treatment Programs 96 Advocacy and Support for Families 98 Respite and Safety Issues 99 Gifts and Talents of Adults with FASD 101 Views of Adults with FASD / People Skills 101 Ability to Survive 102 Technical Abilities / Public Speaking Ability 104 Views of Care Providers 105 People Skills - Care providers 106 Ability to Survive - Care Providers 109 Technical Abilities - Care Providers 110 Public Speaking Ability - Care Providers 110 Superior Ability with Language and 111 Challenges to Communication Perseverance / Volunteerism 112 Gifts, Talents and Challenges - Adults with FASD iv Ability to "Catch-Up" Physical Abilities and Skills with Hands Creative Talents Other Admirable Qualities 113 114 115 116 Chapter Six Discussion - Giftedness in Adults with FASD Need for Advocates Societal Denial and Invisibility of FASD Impetus for Change Provision of Services Strengths - Based Paradigm Shift 118 119 122 125 128 133 Chapter Seven Recommendations Applications to Practice Limitations of Study Implications for Future Research 137 139 140 141 References 143 Appendices Appendix A Appendix B Appendix C 151 152 153 Gifts, Talents and Challenges - Adults with FASD v Acknowledgements 1 was talking about that (FASD) to a group of lawyers and accountants the other day and somebody piped up and said that they had been at a meeting where an elder had said that FASD is a gift and people, of course, were sort of questioning that and looking at them askance and (the elder) said, what is it that we are missing as human beings, and our society, is a sense of community and belonging and what is it that the children with fetal alcohol have taught us that is needed for them is that thing that we all need - which is the sense of belonging and community.... ... the lesson or the piece or whatever is missing from our day to day mainstream life that fetal alcohol can teach us about and that is... we seem to put an incredible value on money and rushing around and owning things and that's not what people with fetal alcohol are good at. What they are good at is caring about each other and the environment and having respectful relationships with the world around them and I think that's an important lesson that is probably why fetal alcohol exists because that's something as humans as a global society we need to look at and to learn from because the things that are really important like caring about each other and taking care of our environment is stuff that is important to people with fetal alcohol and that they are good at." (mother of adults with FASD). Gifts, Talents and Challenges - Adults with FASD vi Dedication This work is dedicated to the adults with FASD that I was honored and privileged to interview - thank you for telling me your story and sharing a bit of your journey with me. Thank you for your wisdom, your generosity, your kindness and your rich insights. Thank you for snowing the amazing possibilities of your lives with adequate support, safety and connections to healthy people. This work is also dedicated to the mothers and fathers of these adults whose tenacity, dedication and courage are changing the fate of all adults with FASD. And finally, it is dedicated to the caregivers who do what they can with the resources they have. Gifts, Talents and Challenges - Adults with FASD 1 Chapter One - Introduction Fetal Alcohol Spectrum Disorder (FASD) is a permanent birth defect with a collection of physical and mental deficits caused by maternal consumption of alcohol during gestation of the child (Astley, Bailey, Talbot & Clarren, 2000; Mills, McLennan & Caza, 2006). These effects became known by a number of early diagnoses, such as Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), and Alcohol Related Neurodevelopemental Disorder (ARND) (Chudley, et al., 2005; Lutke & Antrobus, 2004). Over time, it was discovered that all of these terms could be grouped under the non-diagnostic and umbrella term, Fetal Alcohol Spectrum Disorder (FASD). The term FASD is not a diagnosis but a descriptor, which includes the entire range of disability, which unfortunately, lasts throughout the lifetime of the person affected (Chudley, et al., 2005; Streissguth & O'Malley, 2000). It has since been recognized that problems with cognition and behavior present the most significant challenges to providing support and services to this population (Clark, 2003; Ragsdale, 2006; Streissguth, 1997). Much of the misunderstanding of this disability can be attributed to the lack of knowledge about FASD and the resulting behaviors, which can be directly attributed to the brain damage caused by exposure to alcohol during pregnancy. However, with proper understanding and knowledge of this disability along with the right supports, especially through the formative years and early adulthood, many resulting difficulties can be averted or even overcome. Gifts, Talents and Challenges - Adults with FASD 2 There are many adults with Fetal Alcohol Spectrum Disorder (FASD) living in Canada at this time, although there are no national statistics (Chudley et al., 2005). Conservative estimates suggest that at least 1% of any population is affected; that is, nearly 320,000 people Canada-wide and more than 40,000 British Columbians (Clark, 2003; Lutke & Antrobus, 2004; May & Gossage, 2001; Sampson, et al., 1997). A recent publication by the British Columbia government (2001), A strategic plan to address Fetal Alcohol Spectrum Disorder in British Columbia, states that the overall incidence of FAS is between 0.5 and 2.0 per 1000 births in the USA, with those who may have the full spectrum of FASD diagnoses to be between 5 to 10 times higher. In other recent Canadian studies, it is estimated that the "rate of FAS and related effects at 46 per 1000 native Canadian children in the Yukon and 25 per 1000 in northern British Columbia" (Chudley, et al., 2005, p. 3). Another researcher estimated the rate at 9 per 1000 as a conservative number for Canada and that the cost burden for Canadians of FASD "is profound" and calculated "that adjusted annual costs associated with FASD per child were $14,342" (Mills, McLennan, & Caza, 2006, p. 1). The same researchers calculated the "cost of FASD to Canada of those 1 to 21 years old, was $344,208,000" (Mills et al., 2006, p. 1). These numbers highlight the need for better understanding and support of this disability in real terms. It also shows the magnitude of the problem as it impacts adults with FASD, their caregivers and society as a whole (Ragsdale, 2006). When there is suspected FASD, early identification and appropriate support services need to be provided as a matter of course when a child is born Gifts, Talents and Challenges - Adults with FASD 3 so that these interventions can begin to support these children early in their lives and continue throughout their lifespan. Through appropriate care and support, outcomes can be improved and secondary disabilities decreased (Clark, 2003; Clark et al., 2004; Chudley, et al., 2005; Ragsdale, 2006; Schmidt, 2005; Streissguth 1997). Ragsdale (2006) found that recognition and understanding of this disability, adequate support, alterations to the environment and services that support adults with FASD were indicative of the best outcomes along with optimal functioning. Although much FASD research to date has focused on children and youth, there is also a growing body of evidence that identifies the myriad of challenges and difficulties that the condition presents in the lives of adults (Clark, 2003, Clark, et al., 2004; Conry & Fast, 2000; Copeland & Rutman, 1996; Dorris, 1989; Golden, 1999; Lafond, 2001; Lutke & Antrobus, 2004; Lutke, 2004; Lutke, 1993; Malbin, 1993, 2002; Moore & Green, 2004; Ollech, 2002; Ragsdale, 2006; Riley, 2002; Riley, McKee & Sowell, 2004; Roberts & Nanson, 2000; Robinson et al., 1996; Rutman, LaBerg & Wheway, 2002 & 2004; Schmidt, 2005; Streissguth, 1997,1994; Streissguth, et al., 1999; Streissguth, et al., 2004; Streissguth & Kanter, 1997; Streissguth & O'Malley, 2000; Van Bibber, n.d.; Waller, 2000; Warren & Foundin, 2001; Williams, et al., 1999). FASD is a preventable cause of developmental and mental disabilities, however, the context within which drinking during the gestation of a child occurs is often very complex, challenging and rife with factors that make abstinence extremely difficult, at best (Astley, etal.,2000). Gifts, Talents and Challenges - Adults with FASD 4 Research of adults who have FASD is relatively new with the focus to date on the incredible challenges of FASD and the unmet need for public policy and services to support adults (Clark, 2003; Clark, et al., 2004; Lutke & Antrobus, 2004, Ragsdale, 2006; Schmidt, 2005). There is little actual research that addresses the fact that adults with FASD have areas of strength and abilities, which can be developed, just as with all people. The lack of visibility and general knowledge about this disability, the multiple challenges for adults with FASD, along with possible secondary disabilities (low self-esteem, addictions, troubles with the law, along with others) have led to inadequate education, under-developed skills, and a lack of vocational training (Ragsdale, 2006; Schmidt, 2005). Studies show that adults with FASD often have a life of dependence on social welfare, on their families or are incarcerated due to difficulties with adaptive behavior, mental health, employment, addictions, socialization, crime, poverty, and victimization (Abraham, 2005; Clark, 2003; Clark, et al., 2004; Ragsdale, 2006). Assistance that is available is not grounded in the research about FASD and does not fully recognize the role that brain injury plays in the behavior and comprehension of these adults. There is little understanding about the lack of fit between expectations of the adult and their abilities to fulfill these expectations. Our support systems do not, for the most part, accommodate the need for an alternative means of education, nor do they provide tailored living arrangements or on-going assistance that is neither punitive nor stigmatizing. Presently, support is provided by default through the justice and the welfare systems, which Gifts, Talents and Challenges - Adults with FASD 5 do not address the needs of adults with FASD in a proactive and supportive way and are at best, stop-gap measures (Abraham, 2005; Clark et al., 2004; Lutke & Antrobus, 2004, Rutman et al., 2002; Streissguth & Kanter, 1997). In the end, persons with FASD are seldom equipped to fulfill their dreams and goals, even if they have the potential to do so (Lutke & Antrobus, 2004). Identifying these gifts and talents, as seen through the eyes of their mothers, service providers, and by asking the adults (with FASD) themselves, is the focus of this research. This is important as a strengths based perspective provides a more accurate and balanced picture of adults with FASD and may facilitate a person-centered, comprehensive approach to service provision. When developing programs and policies aimed at substance abuse and substance abuse related special needs, a comprehensive scan and understanding of existing capacities and strengths must occur, and these must be accounted for in the development of any strategies focusing on substance abuse or substance abuse related special needs (De Leeuw & Greenwood, 2003, p. 31). My Standpoint My first job as a social worker involved fulfilling two different roles within the same office in a small northern community. I was both a Ministry for Children and Family Development resources social worker for foster parents, as well as a Community Living Services social worker for adults and children with an Intelligence Quotient (IQ) of less than 70. I now suspect that many of my clients were affected by FASD, although I did not know it at the time. Not surprisingly (given its relatively recent identification), I had not received any training in Gifts, Talents and Challenges - Adults with FASD 6 university some years ago that alerted me to the reality of FASD and its prevalence. A request for Community Living Services support was made to the office where I was employed on behalf of a young adult who had been adopted as a child, and was now living independently within the community. In order to provide any services or support, an IQ score was needed to determine whether she would qualify as a client. The cost of obtaining an evaluation to determine her IQ score was prohibitive. However, after a number of months, I was able to obtain the services of a psychologist to administer the test, which was paid for through Community Living Services funds. Another obstacle to providing this young woman support was the possibility that her IQ score might be higher than the cutoff point of 70 (Aase, 2003). After the assessment was complete, her IQ score was determined to be 75. Fortunately, a very rare exception was made that allowed me to set up funding so that this young woman could live in a family support home that was funded by MCFD. Through this experience, I came to realize that there is a group of people who may have an IQ above the cutoff mark, yet may have many deficits and challenges in terms of daily functioning. Additionally, these individuals are often not connected with any support people or services due to circumstances beyond their control. Many parents of the children who are taken into care by the Ministry of Children and Family Development (MCFD) have been raised within the foster care system, and might have an FASD related disability themselves, if they were to be tested (Astley, Stachowiak, Clarren, & Clausen, 2002). These Gifts, Talents and Challenges - Adults with FASD 7 parents are often required by MCFD to perform certain tasks in order to resume custody of their children, however parents who may have FASD are hindered by their disability and sometimes have difficulty with these requirements. This might be attributed to the unrecognized and unaddressed challenges and limitations that are part of having FASD (Ludwig, 2006). While working as the Resources Social Worker, I often funded foster parents to raise someone else's child at an enormous cost, rather than seeking out ways to provide support to birth parents so they could parent their own children. There is a huge social cost to children being removed from their birth family, often resulting in a disconnection from their own identity and culture. In addition to this, children born into a home where there is alcohol abuse often are born to parents who have experienced the same fate at the hands of their parents - some theories of etiology suggest that alcoholism may be genetically transmitted (Stevens & Smith, 2001). A recent study found that "both mothers and grandmothers had similar characteristics" when seeking to find what mothers of children with FASD have in common, which seems to indicate a "familial association" with FASD (Railton, 2003, p. 1). However, this is not always the case and in some instances the parents or the grandparents could successfully raise their own child(ren) if services could be provided that enhance and support their efforts. It is difficult to understand the logic of paying a stranger to raise a child when the same or smaller amount of money could provide the assistance needed to support parents raising their own children, assuming that it is safe and possible to do so. The child(ren) would benefit Gifts, Talents and Challenges - Adults with FASD 8 greatly from the connections to their extended family, culture, and communities. Families would stay intact and would not lose their roots. Finally, on a more personal level, a relative of mine adopted a two-year old son in the early 1980s, and the child has subsequently had many difficulties, ultimately being expelled from school as the curriculum became too difficult for him. She was encouraged to put him on Ritalin (a drug that has the potential to focus his attention and settle him down), something my relative opposed strongly. She did not believe that giving a drug to her son would help him to understand the curriculum. She believed he needed extra support from the teachers instead, which was not provided. At a young age (14), he got involved with friends who partied frequently and had issues with the law. Eventually, a history of alcohol dependence by his birth mother was shared with my relative as she sought answers to her son's mounting problems. Without the knowledge of FASD, his adoptive mother did not understand his particular difficulties and struggled with his classic FASD behaviors including "poor judgment, lack of impulse control, and illogical thinking" (Lutke, 1993, p. 82). Ultimately, these challenges led to being expelled from school due to learning difficulties, early fatherhood, addiction to alcohol and drugs, as well as the inability to live independently, despite many attempts. My relative has suffered the guilt and shame of being a "bad parent" raising a "bad kid" in their small insular community. Her marriage has suffered greatly as her partner cannot understand why their son does not change his ways, get a job, and keep it. What the father hopes for most of all is that their son will become Gifts, Talents and Challenges - Adults with FASD 9 independent. The reality is that their son may never be able to leave home, as there are few supports available to him in their small community. At the same time, this young adult has incredible artistic talent, as well as the ability to make oak furniture that is beautiful and functional, coupled with the knowledge and ability to fix any piece of machinery without any formal training. What keeps him dependent on his parents is that he gets bored easily and quits his job, or misses work because he has been up all night. He also has great difficulty with daily living tasks such as healthy self-care, maintaining routines, and sticking to a budget in which he pays for the necessities first. He is extremely social and is not able to distinguish genuine friends from people who are his companions, but do not have his best interests at heart. He is easily influenced by peers and lacks the ability to judge real friends. His lack of insight into cause and effect is typical of adults with FASD. Societal Context - Lack of Services There appear to be two reasons for the lack of services for adults with FASD. The first is the physical invisibility of the condition, particularly in adults. Historically, Fetal Alcohol Spectrum Disorder was considered a condition that disappeared as the child matured, because the range of effects manifest differently for each individual and some of the microcephaly and other apparent physical malformations become less visible with age (Dorris, 1989, Streissguth & Kanter, 1997; Streissguth & O'Malley, 2000). More recently, there is an increasing awareness that FASD is a lifelong disability that is not always apparent in the adult's appearance (Ragsdale, 2006). At the same time, the Gifts, Talents and Challenges - Adults with FASD 10 necessity of seeking out a specific diagnosis has become clear. A diagnosis and an assessment, along with the provision of appropriate services in a timely manner affords the best opportunity to ameliorate the difficulties associated with FASD (Chudley, et al., 2005; Clark, 2003; Ragsdale, 2006; Streissguth, 1997). A second factor contributing to the lack of services for adults with FASD is rooted in philosophical underpinnings on which our social support system is based. This philosophy is one that puts the onus first and foremost on the family members of these adults to support them rather than making publicly funded services universally available (Carniol, 1995, 2000; Mullaly, 1997, 2002). Further, within a society where productivity is seen as the key to selfsufficiency, independence, and self-worth, having a visible disability can be very challenging - having an invisible disability, even more so. Ben Carniol (1995, 2000) states that social services delivery in Canada does little to change the conditions of poverty, address the gap between the rich and the poor, address the prejudice and discrimination towards "the other" (women, people of color, homosexuals, people with disabilities, etc.) in our society, and to initiate fundamental structural changes where they are needed most. Carniol (1995) states that people are living lives that are "broken and shattered - lives without hope for a future" (p. 4). In some ways, this statement reflects the state of affairs for some adults with FASD who have neither societal support, nor the support of family or friends to obtain assistance and advocacy. Gifts, Talents and Challenges - Adults with FASD 11 A More In-Depth Examination of Service Provision Historically, our social support system has been founded on the notion that problems are inherent in the individual and solutions must be focused on addressing personal deficits (Guest, 1997). Within this approach is the notion of deserving and undeserving members of society. Individuals who are hard working, responsible and productive citizens are seen to be deserving of respect, validation, and positive regard by society. These "responsible" individuals are the majority of the population and have a great deal of influence over how the taxpayers' dollars are divided and how publicly funded services are implemented. In addition to this, competition for these dollars is fierce and the majority of taxpayers are concerned with mainstream issues that directly affect their wellbeing. The general view in society is that individuals who make what are regarded as poor choices, who cannot hold a job consistently, are not steady and productive in their work habits, have poor or non-existent parenting skills, and who suffer from addictions, are seen as being less deserving and in need of correction. They are perceived as causing their own problems through laziness, sloth, or willful ignorance. As such, this segment of society is sometimes regarded and dealt with in a more punitive fashion by our institutions (Guest, 1997; Mullally, 1997, 2002). Because these members of society are usually the poorest, as well as being in the minority, they often do not have a voice or the political clout to effect change at the level of policy within the governing parties (Carniol, 1995, 2000; Guest, 1997). The hierarchical nature of social services in Gifts, Talents and Challenges - Adults with FASD 12 Canada ensures that these clients are almost always the "lowest in the pecking order" socially (Carniol, 1995, p. 5). It could be argued that the current Canadian social welfare system is based primarily on a residual philosophy that came about with the rise of capitalism, industrialization, and modernization and the predominant view that a person's social problems originate with the individual (Carniol, 1995, 2000; Guest, 1997; Mullaly, 1997, 2002). The residual model of social services delivery places the responsibility to address issues and concerns squarely on the person, the family and community organizations, such as churches, rather than burdening the system to find ways to address the underlying source of the problem. This model serves the private market in that society at large is not responsible for its less fortunate members (Mullaly, 2002). In contrast to this, the institutional model posits that society has the responsibility to assist its citizens to overcome the negative impacts of a market system (Mullaly, 2002). Even within the institutional model, assistance remains at a minimal subsistence level serving only as a fallback measure if the family or a variety of charitable organizations do not meet the individual's most minimal needs. As the Canadian social welfare system evolved, residual and institutional views have predominated depending on which political forces are in power at any particular time (Mullaly, 2002). As such, welfare payments were never designed for the long-term but as an interim measure until the individual was able to be self-sufficient. Unfortunately, for individuals with an invisible disability, welfare is their only source of income Gifts, Talents and Challenges - Adults with FASD 13 unless they are able to get and keep a job, which is difficult for a variety of reasons. Cultural Context The late Michael Dorris (1989), an indigenous anthropology instructor, was the first parent to document his experience with this disability. He wrote an autobiographical account of his experiences after adopting a young son with FASD. The poignant story of his son, Adam, traces the "discovery" of Fetal Alcohol Spectrum Disorder, as well as the heartache and disappointment he experienced as he came to realize that FASD was the source of his son's problems - and that the condition would last throughout his son's lifespan. Michael documented the extent of the damage in Adam's life, caused by alcohol - physically, mentally, and emotionally. Typically, Adam struggled with early developmental milestones, which was exacerbated when he began school. Decreased cognitive functioning led to comprehension and learning problems along with social problems, which eventually resulted in him leaving school early. As a result of learning about FASD, Michael researched and documented the history and effects of colonialism on the indigenous peoples, along with the effects of marginalization, poverty, residential schools and the resultant social problems that have produced children with FASD within his culture. His research provides a comprehensive history of the loss of traditional territories, customary lifestyle and languages, which contains indigenous history, beliefs, and wisdom, along with the loss of traditional social structure, societal organization, and Gifts, Talents and Challenges - Adults with FASD 14 indigenous medicines. The introduction of alcohol to this culture has created untold generational suffering, along with these monumental losses. Individual Responsibility Mullaly (1997) states: "Society is viewed as comprising social institutions that serve the individual as long as he or she makes full use of available opportunities for personal success" (p. 24). Individuals who are suffering from FASD are often not able to access available opportunities for education, housing and vocational training for a variety of reasons. It is hoped that my project will contribute to an attitudinal shift that includes the abilities of adults with FASD rather than just their multiple challenges. Without this research, an incomplete picture of adults with FASD is produced - one that is focused only on their challenges and limitations. Gifts, Talents and Challenges - Adults with FASD 15 Chapter Two - Review of the Literature One of the leading FASD researchers, Ann Streissguth (1997) states, ...(e)veryone can help individuals with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) through understanding, advocacy, and appropriate services. Yet only when communities adopt a life-span approach to understanding and preventing alcohol-related birth defects, extending help to both alcohol-abusing mothers and their children and then to the children as they become parents, can the condition be ameliorated. With a lifespan approach, different services and people can help at many points along the way; any help, whenever it comes, is better than no help at all (p. 120). Definition of FASD FASD is an umbrella term that has been coined to refer to a range of conditions resulting from the impact of alcohol on the fetus in utero - with even mild forms sometimes leading to major lifetime consequences (Chudley, et.al., 2005; Sokol, et al., 2003). The severity and effects of the disability are dependent on a large number of factors. One of the most significant factors is the amount and timing of maternal consumption of alcohol, with the highest number of drinks per occasion being the most detrimental (Warren & Foundin, 2001). The effects of prenatal exposure to alcohol are not universal and depend on many factors, such as the duration and severity of alcohol use, the timing of exposure to alcohol during fetal development, maternal nutritional status, access to prenatal and postnatal care, adequate nutrition, and a rich developmental environment (Chudley, et, al., 2005). Additional risk factors are a higher maternal age and a lower level of education, lower socioeconomic status of the mother, paternal use of substances during pregnancy in that it encourages maternal drinking activity, fewer prenatal visits, serious violence and trauma Gifts, Talents and Challenges - Adults with FASD 16 along with mental health problems (British Columbia Government, 2001; Chudley, et al., 2005, Railton, 2003). Children with FASD FASD is a permanent birth defect and the leading cause of non-genetic mental retardation and cognitive impairment in the western world (Astley, et, al., 2000; British Columbia Government, 2001; Mills, et al., 2006; Sokol, et al., 2003). The syndrome is characterized by facial dysmorphology, reduced growth rates (prenatal and post-natal), and central nervous system damage with a unique pattern of minor facial anomalies (Astley, et, al., 2000; Clarren & Smith, 1978; Sokol, et al., 2003). The range of disabilities includes an abnormal growth pattern with a below-average weight, head circumference and height, which could remain throughout the lifespan of the individual (Williams & Howard, 1994). One of the most common mental health problems in children with FASD is attention-deficit hyperactivity disorder (Mills, et al., 2006; Sokol, et al, 2003). The identification of "FASD requires a medical diagnosis in the context of a multidisciplinary assessment" and it's guidelines are complex (Chudley, et al., 2005). Other common manifestations of this disability are issues with attachment, as well as with behavior, rules, and transitions. Mood disorders, along with eating and sleeping problems are also seen in some individuals (Mills, et al., 2006, Stade, et al., 2006). Older children may have problems with aggressiveness, feeling depressed and with their self-image - which might be due to the fact that their disability (brain damage) is unrecognized and they have Gifts, Talents and Challenges - Adults with FASD 17 been trying to live up to unrealistic expectations of those around them. As the child matures, there may be problems with alcohol or drug use, which may be due to exposure to these chemicals before birth (Mills, et al., 2006, Sokol, et al., 2003. Many individuals are born without the physical indicators of FASD and, for those that are, these physical manifestations become less visible as the person reaches maturity. If the prenatal history of drinking during gestation is not available, diagnosis in adulthood becomes more challenging (British Columbia Government, 2001, Chudley, et al., 2005). If the mother drinks during pregnancy, there may be long-term physical, mental, behavioral and learning disabilities as there has been damage to the child's brain, which has lifelong consequences for her child (Chudley, et al., 2005). These things cannot be changed once the child has been exposed to alcohol to the extent that causes this damage. However, what can be changed after the child is born is early identification resulting in appropriate interventions and services that can and will lead to much better outcomes for individuals with FASD (Burd, Cox, Fjelstad, & McCulloch, 2000; Dupuis & Urness, 2004; Lutke & Antrobus, 2004; Malbin, 2002; Ragsdale, 2006; Roberts & Nanson, 2000). Proper identification and recognition can lead to better understanding of this disability and to the application of support that creates the best environment for the child reaching their highest potential. FASD in Adults As an individual with FASD reaches physical maturity, there is a social and societal expectation that (s)he will move towards independence and Gifts, Talents and Challenges - Adults with FASD 18 productivity. However, "normal" societal expectations of self-sufficiency and independence set these individuals up for failure, as their adaptive functioning level can be far less than their chronological age (Conry & Fast, 2000). Adults with FASD often have problems with daily living and independence skills (Clark, 2003; Ragsdale, 2006; Roberts & Nanson, 2000; Schmidt, 2005; Streissguth, et al., 2004). They can also have difficulties with social skills, learning from their mistakes, and understanding cause and effect. As a result of these factors, their lives are often marginal and they live in poverty due to factors such as inadequate vocational training, low academic achievement, poor parenting skills, addiction to substances, and the inability to live independently (Clark, 2003; Ragsdale, 2006; Williams & Howard, 1994). All of these challenges make life for my relative's son very difficult and explain much of his life's events and the continual dependence on his family. Secondary Disabilities Research has shown that there is a higher risk of secondary disabilities (mental health problems, disrupted school experience, trouble with the law, addictions to alcohol and drugs, incarcerations, and inappropriate sexual behaviors) in individuals who are not easily identifiable as fetal alcohol affected (Streissguth & O'Malley, 2000; Streissguth, 1997). Other factors that influence the development of secondary disabilities are being over the age of 20; living independently, without the help of a caregiver; needing a higher rate of support; and being vulnerable to manipulation (Clark, et al., 2004). Gifts, Talents and Challenges - Adults with FASD 19 The most fortunate individuals are able to find support within families that are committed to their health and welfare (Clark, et al, 2004; Streissguth, et al., 2004). However, many adults with FASD, particularly those who have been through the foster care system, lose their connections with their families. In a recent study, Astley and colleagues (2002), found that prevalence of FASD in the foster care population was roughly 10 to 15 times higher than in the general population. Only about one third of babies with FASD stay with their birth mothers; the others go into foster care or are adopted (Baxter, 1996; Malbin 1993). The strongest factors protecting against secondary disabilities in adults with FASD are early identification, proper assessments, and appropriate interventions followed by special vocational training and supported on-the-job experience that might lead to gainful employment (Clark, et al., 2004; Chudley, et. al, 2005; Conry, Fast, & Loock, 1997; Riley, 2002; Streissguth, 1997; Streissguth, et al., 2004; Streissguth & O'Malley, 2000). Adults with FASD also need safe shelter and a sense of community (Lutke & Antrobus, 2004; Streissguth, 1997). Such supports would make a huge difference in the lives of anyone with FASD - particularly in terms of obtaining "satisfying lifetime employment that enhances feelings of self worth and makes them into productive citizens" (Streissguth, 1997, p. 202). The need for appropriate training, education and living arrangements is universal for young adults to achieve their goals, their independence, and their desire to be productive and valued members of society. Gifts, Talents and Challenges - Adults with FASD 20 Intelligence Quotient (IQ) Score and Adaptive Functioning Most adults with FASD fall within the normal range of intelligence. It is a myth to believe that every person with FASD is mentally retarded, although having FASD is the most common cause of mental retardation in Canada (Streissguth, 1997). In a study involving 178 individuals with FASD, only 25 percent of the participants could be classified as such (Streissguth, 1997). In fact, there is a broad spectrum of IQ scores demonstrated by her study. Further, she states that adults most severely affected are easily identified at birth and tend to meet the IQ score requirement (less than 70) that is necessary to receive services from Community Living Services in British Columbia (cited in Aase, 2003, p. 10). Lutke and Antrobus (2004) state that almost all individuals with FASD have an adaptive quotient (AQ) < 70. AQ measures one's ability to function day to day without supports in the areas of communication, socialization, daily living skills (personal and community), time management, employment, critical thinking, judgment, etc. (p. 15). The report further states, the gap between IQ and AQ is huge in FASD, anywhere between 10 to 60 points.... Adults with FASD are handicapped to such a degree that they are unable to manage the mechanics of daily life or access services or supports on their own; the process is too difficult for them ( Lutke & Antrobus, 2004, p. 16), although adults with FASD who have an IQ score below 70 make up only about 25 percent of the population (Streissguth, 1997). Adults with FASD may have a chronological age of 21 years with the physical maturity of their actual age, but have the verbal skills of someone three Gifts, Talents and Challenges - Adults with FASD 21 years younger. Their information processing may lag by five years; their reading ability might be of someone eight years younger, their abstract reasoning of someone 11 years their junior, their writing and math skills 13 years behind, and their social and living skills of someone who is 16 years younger than their chronological age. A particular adaptive functioning score of someone with FASD is typically much lower than his or her IQ score (Clark, et al., 2004). In a recent study, Clark and colleagues (2004) found that only 34% of the clients in their study had an IQ below the 70 cutoff mark, which made them eligible to receive services from Community Living British Columbia. (Adults right on the 70 cutoff marks appear to fall in the gray area where they may or may not receive services, depending on the discretion of decision makers). Of the adults above the cutoff, 8 1 % required moderate to high levels of care, which indicates a severe discrepancy between their IQ score and their adaptive skills scores. This study concludes that an IQ score is not a reliable measure of the individuals' ability to be independent and that adaptive functioning is a more accurate indicator of whether these individuals would experience any secondary disabilities or require the provision of support services (Clark, et al., 2004). The Adaptive-Behavior Assessment System (ABAS-II) provides composite norms in three areas of adaptive behavior: conceptual, social and practical. It allows one to "evaluate areas of functioning, determine strengths and weaknesses and specify training goals" (Harcourt Assessment, Inc., 2005). It can also be used to assess problems with "motor, speech and language, hearing, and neuropsychological disorders" to determine how well the individual is managing Gifts, Talents and Challenges - Adults with FASD 22 within their environment (Harcourt Assessment, Inc., 2005). This test can be used with the Wechsler Scale to evaluate an intellectual disability and is provided by a trained professional. The criterion for these support services in British Columbia is an IQ score of 70, which may be a very poor indicator of the person's true functioning (Aase, 2003). This rule is under challenge at the present time as the highest court in BC has ordered the Ministry of Children and Family Development to continue to provide services for a young man even though his score is above the IQ cutoff mark of 70 {Fong, 2006). Hopefully, this case will highlight the difficulties that lower adaptive functioning presents, along with the awareness that requiring an IQ score of 70 leaves another 75% of adults with FASD without any housing, lifeskills training, or financial support, other than the minimal amount of public assistance (Clark, 2003; Clark, et al., 2004; Ragsdale, 2006; Streissguth, 1997). This causes one to wonder what happens to the people who are not eligible for support, yet are functioning at a very marginal level. In particular, it gives pause for thought about what gifts and talents these individuals have that either remain underdeveloped or never recognized abilities which might be developed and utilized in some form to allow a more independent and needs satisfying life. Benefits of Early Identification Early identification and the provision of services leads to better long-term outcomes for adults with FASD due to the reduction in secondary disabilities and could lead to a more accurate picture of the incidence and prevalence of this Gifts, Talents and Challenges - Adults with FASD 23 disability (Burd, Cox, Fjelstad, & McCulloch, 2000; Clark, et, al., 2003; Chudley, et al., 2005; Lutke & Antrobus, 2004). It could also be used as a potential intervention with the birth mothers, which may prevent any other siblings from a similar fate (Chudley, et al., 2005). It could also lead to a significant reduction in social and societal cost if these disabilities could be ameliorated or prevented altogether. In terms of social cost, providing diagnostic and intervention services provides a "very cost-effective approach to FAS primary prevention" and the cost of raising a child with FAS would be roughly 30 times the cost of preventing FAS in the child. The benefit to the mothers, their children and society would be immeasurable (Astley, et al., 2000, p. 507). A recent estimate over the lifespan of someone with FASD (until the age of 65) is $ 2,000,000 US or, translated into August 2004 Canadian dollars, about $ 2,640,000 (Lutke, 2004, p. 36). Increased identification of this disabling condition could assist in bringing it into the public eye and putting it on the political agenda (Rutman, La Berg, & Wheway, 2002). This would allow service providers and policy makers to better understand the need for supported independent living, lifeskills training, supported parenting programs and others. The inability to achieve some form of independence and a higher standard of life can leave the person with FASD feeling defective, yet their lack of success could be attributed to a failure of the current social system to recognize and support the development of their abilities and talents (Lutke & Antrobus, 2004; Schmidt, 2005). The preparation they receive for an independent life is negligible as the present educational system and training requirements in most Gifts, Talents and Challenges - Adults with FASD 24 colleges and universities are not adapted for someone who learns differently, especially when due to a disability that is unrecognizable to the average person. Adaptation of curriculum would allow them to be more successful, along with the other students. Access to Early Identification People with FASD are often unidentified due to the cost of the diagnosis and assessment process, limited access to qualified assessors, and difficulties of obtaining a comprehensive multidisciplinary diagnostic evaluation in adulthood (Chudley, et al., 2005). Other hindrances to the assessment process are obtaining an accurate maternal history of alcohol consumption and/or the individual growing past the age were making a diagnosis is easier, usually between the ages 2 to 11, due to the physical markers, which can disappear as individuals with FASD mature (Ragsdale, 2006). FASD - A Northern Focus FASD is a significant problem, especially in northern remote communities as there are very few services and supports available (Ollech, 2002). In one such Canadian community, the rate of prevalence was found to be "quite high and of concern" (Williams & Odaibo, 1999, p. 194). The prevalence of FASD has been estimated between 36% and 60% in some rural communities in Canada (Ragsdale, 2006). The lack of access to, and cost of obtaining a diagnosis, the dearth of available services, a lack of understanding about the nature of FASD, and limited supports in terms of dollars makes life very difficult and challenging Gifts, Talents and Challenges - Adults with FASD 25 for adults with FASD, especially in northern communities (Ollech, 2002; Ragsdale, 2006). It is interesting to note that Dr. Kwadwo Ohene Asante, who "is recognized as an expert in the area of Fetal Alcohol Syndrome and was one of the first paediatricians to study and publish on fetal alcohol syndrome in Canada" (The Asante Centre for Fetal Alcohol Syndrome, 2006), did much of his early work in northern British Columbia where he served as Medical Director of the Kitimat Child Development Centre from 1973 to 1990 as well as having an extensive paediatric consulting practice across northern BC and the Yukon. Following this early work, he founded the Asante Centre located in Maple Ridge, BC which provides a wide range of services to children, youth and adults with FASD and their families (The Asante Centre for Fetal Alcohol Syndrome, 2006). Involvement with the Justice System Individuals with FASD often end up in conflict with the law. The neurological impairments that last a lifetime, such as, impulsivity, hyperactivity, learning disabilities, and poor judgment, make them particularly susceptible to involvement with the law (Conry & Fast, 2000, Rutman, et al., 2002). As many as one quarter of the youth "remanded for a psychiatric and psychological assessment" in British Columbia have FASD (Conry & Fast, 2000, p. xiv). Ironically, some of the living supports that adults with FASD need are provided within the prison system. There is structure, shelter, vocational training, limited choices, schooling, and support by consistent care providers. However, prison life also contains a concentration of criminal elements, lack of freedom, and Gifts, Talents and Challenges - Adults with FASD 26 limited possibilities for adaptation to the world on the outside. Additionally, incarceration results in stigma once the person is released which makes finding a job even harder. Adults with FASD are especially vulnerable to peer pressure and often have trouble discerning when they are being "used" by others. In addition to this, they may have a high vocabulary, yet a low comprehension level - something which may not be apparent to professionals in the justice system and which might lead justice staff to assume a level of understanding which, in fact, is not there. Adults with FASD are vulnerable to manipulation and deceit by people who might take advantage of them. In addition, adults with FASD tend to be skilled at confabulation - the ability to tell stories that are untrue in a way that convinces themselves and others that they are true (Boland, et al., 1998; Conry & Loock, 2000; Conry, Fast, & Loock, 1997). The amount of money that is spent housing a person with FASD in a correctional facility might be better spent on helping them become more productive and integrated members of society outside the justice system (Conry & Loock, 2000; Boland, et al., 1998; Lutke & Antrobus, 2004). The correctional system is the only system that cannot deny "eligibility" to adults with FASD and is a default system in society in the absence of supports provided to this population (Lutke & Antrobus, 2004). This population is "among those most likely to become homeless upon release from prison, the least likely to be able to apply for social assistance and very likely to have lost family support" (Lutke & Antrobus, 2004, p. 21). Extensive planning upon release, along with safe and Gifts, Talents and Challenges - Adults with FASD 27 appropriate housing that provides structure and routine, job training and on-going life skills training, are recommendations that would improve recidivism rates for adults with FASD (Boland, et.al., 1998). Needs of Families Recommendations by a Health Canada report, Best practices: Fetal Alcohol Syndrome/Fetal Alcohol Effect and the effects of other substance use during pregnancy (2001), are the need for peer support and a connection with other affected families, both by the adult with FASD and those who support them. A critical component of ensuring that adults with FASD receive support and counseling is through the health practitioners, who work routinely with this population, receiving the basic training and practical knowledge provided by the adults with FASD who have been educated about their own disability. Additionally, some of their care providers have gained their knowledge through working closely with those with FASD and have the expertise to share with these professionals. The Best Practices report recommends that respite and relief be provided to the families and other support people of those with FASD, as raising and living with someone with FASD can be very challenging for the family members which leads to stress and sometimes, burnout. This is often due to the on-going necessity to provide support into the adult years. Services through publicly funded sources would allow families to stay involved without incurring a cost to their own well being. The report also recommends independent living along with the ability to access supports as necessary. Gifts, Talents and Challenges - Adults with FASD 28 Need for Research and Policy Change Calls for research and changes in present services and policies to acknowledge and support the special needs over the lifespan of someone with FASD are contained in current research literature (Clark, 2003; Clark, et al., 2004; Davis, 1996; Ragsdale, 2006; Rutman, et al., 2002, 2004; Streissguth, 1997). For example, research is needed to determine how addiction is different for adults with FASD and how best to deal with treatment. Treatment and rehabilitation for alcohol or drug misuse may need to be adapted for adults who have mild cognitive deficits, as these challenges are often compounded by problems with attention and emotional instability (Streissguth 1994). Recognizing the divergent range of abilities, as well as the unique areas of giftedness of adults with FASD, is a starting point and the key to support and training. A strengths-based approach would counter-balance the myriad of problems "that involve the home, the schools, the health care system, vocational training, the criminal justice system, and the community" (Streissguth, 1994, p. 80). Unrecognized Strengths and Abilities The positive attributes and strengths of adults with FASD have not received a great deal of attention in the existing research literature. Diane Malbin (1993) introduces the concept that individuals with FASD have strengths in some areas and deficits in others, which can fluctuate on a daily basis. Support people who use the individual's strengths and interests as a starting point with adults with FASD can often compensate for structural changes in their brain by providing encouragement, understanding, validation and support through Gifts, Talents and Challenges - Adults with FASD 29 refraining inappropriate behavior, while developing treatment and strategies to cope (Malbin, 1993; Schmidt, 2005). Adults with FASD are described as "loving, compassionate, artistic, determined, and hopeful" (Malbin, 1993, p. 1). She further states, A common misperception that "nothing works" surrounds people with FASD. While it is true that many people still struggle, we now have enough understanding of this condition to be able to support successful outcomes. For example, the University of Alaska recently graduated an artist with FASD who went on to earn her teaching credential and is now teaching art in a public school. In another city, during her recent high school graduation ceremonies, a young girl with FASD was described by her teacher as quiet, tenacious, determined, and an asset to her school community (Malbin, 2002, p. 9). Individualized support is appropriate for each person with FASD as each one is a unique individual with areas of strengths and areas of challenge (Ambrosi & Ketsa, 2006; Dupuis & Urness, 2004). The goals of support services must be individualized to be most effective for each person. Dupuis and Urness (2004) state that the importance of knowing individual strengths and deficits cannot be overstated: The key to providing supports that will be meaningful and effective to the individual lie with the ability to utilize existing strengths to counteract or decrease problematic behavior (p. 22). Goals appropriate for each individual gives the adult with FASD the message that they are persons who have positive attributes and are capable of learning and making healthy choices. It also helps them to "buy into" working with support services when the goals being worked on are their own goals rather than those of the service provider or family member (Dupuis & Urness, 2004, p. 22). Gifts, Talents and Challenges - Adults with FASD 30 Malbin (2002) describes anecdotal instances of successful living by individuals with FASD who are a "drug counselor, a teacher, an internationally known musician, an electrician, a computer technician, a husband and father, a loving daughter and a respected community leader" (p. 10). These examples provide evidence that there are effective ways to work with and support individuals with FASD, focusing especially on their unique areas of strengths and interests. Riley (2002) referred to this "relative pattern of strengths and weaknesses" in children with FASD, during a keynote address to the FAS Summit in Anchorage, Alaska (p. 13). Streissguth (1997) agrees with the following statement: "Among many adolescents with FAS/FAE, there is a strong drive to succeed in life and an ambition to 'make something of themselves...'" (p. 203). However, "primary strengths may erode if they are not recognized and encouraged" (Malbin, 1993, p. 36). Further, a deficit model causes the person to believe that their strengths are non-existent or unimportant, especially when the person is defined by their deficits instead of their strengths. This does nothing to enhance self-esteem and the determination to overcome life's challenges. Strengths common to many adults with FASD include the areas of music, singing, playing instruments, composing, fine or applied arts and crafts, spelling, reading, computers, mechanics, wood working, skilled vocations such as welding, electronics, and mechanics, writing, poetry and others (Malbin, 2002, p. 37). She describes additional strengths such as strong long-term visual memory, being friendly, loyal and loving, eager to please, determined, concrete, experiential, contextual learners, work well with their hands, learn by doing rather than by being told, learn through Gifts, Talents and Challenges - Adults with FASD 31 relationship where consistency, continuity and relevance are present, as well as where all modalities are involved (Malbin, 2002, p. 37). This description accurately reflects the First Nations way of learning and teaching. The previous author further states there is a gradual "catch-up potential for people with FASD" including the "gap between chronological and developmental age narrowing after 25 or 30" (Malbin, 2002, p. 61). In addition to this, some adults with FASD "make wonderful parents" (Malbin, 2002, p. 71). This anecdotal information about the strengths of adults with FASD is based on Malbin's own experience. This viewpoint is also confirmed by many others who have worked in the area of supporting adults with FASD (Ragsdale, 2006; Schmidt, 2005). Benefits of Strengths-Based Approach Focusing on strengths provides the basis of supporting individuals with FASD, and could lead into vocational training that is "strengths and interest" based, as the individual matures (Ambrosi & Ketsa, 2006; Malbin, 2002; Ragsdale, 2006; Schmidt, 2005; Streissguth, 1997). Productive work is an anchor that gives structure to the day, gives focus to one's life and provides proof that these individuals are adults. It also contributes greatly to one's self-esteem (Streisguth, 1997). Work opportunities must be suited to each individual's unique needs and capabilities (Ragsdale, 2006; Schmidt, 2005; Streissguth, 1997). Identification as someone who has FASD within the justice system could lead to more cost effective and life-enhancing ways of providing vocational training and social skills training that might decrease recidivism. Alcohol and drug treatment Gifts, Talents and Challenges - Adults with FASD 32 programming could be offered in a way that teaches adaptation skills, which are more relevant in real life (Streissguth, 1997). Streissguth (1997) further recommends teaching skills that enhance the interests and skills of the particular student, with identification of their strengths as the starting point. Need for an Attitudinal Shift Research, education and awareness are needed to raise the profile of adults who suffer from FASD, and specifically to change the perception that they do not exist and/or that they are inherently deficient or willfully causing their own difficulties. This perception needs to be replaced with one that appreciates and supports those with FASD through continual assistance in adaptation, comprehension, and decision-making skills. A shift in attitude from one that focuses only on deficits and challenges to one that also seeks out natural talents and gifts, as well as untapped potential areas for growth, could also result in a philosophical shift in the types of services and methods of service delivery available (Saleeby, 2002; Schmidt, 2005). Offering pro-active support at the beginning of the child's life and continuing throughout the lifespan can lessen societal stigma, enhance inherent capacity, and decrease secondary disabilities such as addictions, difficulties with the justice system, unemployment, homelessness, social isolation, and low self esteem, among other impacts (Clark, et al., 2004; Conry, Fast & Loock, 1997; Riley,2002; Streissguth, 1997). FASD exists on a continuum with the effects ranging from mild to severe, with most adults with FASD having an IQ of over 70, which is the cutoff range for support services provided through Community Living British Columbia (Aase, Gifts, Talents and Challenges - Adults with FASD 33 2003). This leaves a large number of these adults vulnerable and without access to supports, save for their families. Their lower adaptive functioning score creates dependence on others and an inability to achieve their goals. For many of adults with FASD, their future is bleak indeed, especially for those who are without any familial support or healthy connections to support people. Gifts, Talents and Challenges - Adults with FASD 34 Chapter Three - Focus of this Research Statement of the Research Inquiry The researcher sought to interview and document the needs of adults with FASD, the barriers they experienced that kept them from achieving their goals, and finally, their gifts and talents. This process allowed the participants to give voice to any difficulties and frustrations they may have faced in living with FASD, or in the case of the care providers and mothers, advocating and/or providing support and services for the adults with FASD in their lives. The key informants of this research are six adults with FASD, six mothers (maternal or adoptive), and two care providers who have provided supports and services to adults with suspected FASD. Additionally, one caregiver of an adult with FASD has been included. The six mothers and one care provider represented 17 adults with FASD. Theoretical Perspective This research tells the story of adults with FASD by looking at their own strengths, what barriers they have faced and their perceived needs as they see them and as seen through the eyes of significant others in their lives. The results of barriers and needs questions will be addressed first so as to end in a positive framework with an examination of strengths and abilities. This research is situated within a structural, critical social work perspective using a feminist philosophy and a strengths-based approach. All research involves "issues of power" and "each research report is authored by race, gender, class and is politically-oriented" (Rossman & Rallis, Gifts, Talents and Challenges - Adults with FASD 35 1998, p. 66). Oppressed and marginalized groups have been silenced by traditional research and the critical assumptions of subjective knowledge. Qualitative research is uniquely suited to giving voice to the people whose stories may not have been heard (Rossman & Rallis, 1998). This study endeavors to allow adults with FASD, as well as their care providers, to share their experience of their reality of this often invisible disability of FASD, as well as the particular gifts and talents they possess, along with the possible lack of understanding and societal support that they may have experienced. Both critical social theory and feminist philosophy, work to connect "private troubles" to inherent failings in our social system structures and to change systems from within. Connecting personal troubles with the political allows those who are oppressed to gain control over their own lives and destinies (Carniol, 1995, 2000; Ife, 1997; Mullaly, 2002, 1997). Oppressed people, working together, create knowledge and collectivism, which in turn creates public awareness, and therefore the political will to change oppressive structures (Carniol, 1995, 2000; Ife, 1997; Mullaly, 2002, 1997). Critical social theory, feminist philosophy and a strengths-based perspective support and highlight the strengths of the oppressed rather than blaming them for their troubles (Ife, 1997; Saleeby, 2002). The values of empowerment, consciousness-raising, inclusiveness, anti-racism, normalization, collectivization, redefining problems, strengths-based, and dialogical relationships, speak to the structural perspective that "the person is political" (Mullaly, 1997, p. 164) - a central tenet of a structural Gifts, Talents and Challenges - Adults with FASD 36 social work approach, critical social theory, and feminism (Carniol, 1995, 2000; Creswell, 1998; Ife, 1997, Mullaly, 2002, 1997; Reinharz, 1992; Saleeby, 2002). Critical social work theory and feminism provide a critique of power imbalance and conditions that favor one segment of society (Carniol, 1995; Creswell, 2003; Reinharz, 1992; Saleeby, 2002), specifically those with financial means. These theoretical perspectives work to debunk myths and empower people to radically change society by revealing true conditions, providing them with tools, and helping them visualize and strive for a more equitable and just society (Ife, 1997; Neuman & Kreuger, 2003; Saleeby, 2002). Economic prosperity is the goal of the market, which subordinates the vision of humanity supported by critical social work practice, such as "the worth of the individual, social justice and the code of ethics that enshrines the values of humanism" (Ife, 1997, p. 99). A critical social work approach seeks to challenge the "economic rationalism discourse" (Ife, 1997, p. 202) that supports the goal of prosperity for the minority, while ignoring its effects on society, and in particular, on the marginalized. In this way, critical social theory provides "criticisms and alternatives to traditional or mainstream social theory" (Mullaly, 2002, p. 15). Both the feminist and critical social work approaches oppose conventional social work theory, which tends to maintain the status quo rather than to change it (Mullaly, 1997, 2000). Both perspectives locate the oppressed as the subject of interest and highlight the domination of one group over the others. Ife (1997) believes that social workers must privilege "the voices of the disadvantaged" in the forum of public debate (p. 202). Liberation of the Gifts, Talents and Challenges - Adults with FASD 37 oppressed through creating awareness and changing attitudes is the ultimate hope (Carniol, 1995, 2000; Ife, 1997; Mullaly, 2002; Reinharz, 1992). The feminist philosophical research stance also aims to empower the oppressed and create societal change through hearing the voices and lived experiences of the marginalized (Creswell, 2003; Ife, 1997; Reinharz, 1992). "Previously, radical social workers had based themselves on either a Marxist or a feminist analysis (or sometimes both)" (Ife, 1997, p. 202). Both feminism and Marxism have highly developed critiques along with clearly articulated alternatives to the present system (Ife, 1997). Reinharz (1992) believes that feminist research makes a political statement, and works to change the structures and systems within which we function by raising the consciousness of those who read and participate in this research. Feminist research often has a political agenda, through action resulting in liberation (Punch, 1998). Feminist philosophy is also a good fit for this project as it seeks to acknowledge and understand the inherent inequalities that have oppressed the disadvantaged based on "classism, ageism, physical disability, mental disability, heterosexism, and so on" (Mullaly, 1997, p. 166). Adults with FASD have been oppressed, many times, unknowingly. A strengths-based perspective adheres to the central principles of honoring and respecting the strengths and inherent wisdom of each individual, group, family, or community which have been gained through life's challenges (Saleeby, 2002). It recognizes that disadvantage and struggle can be a source of challenge and opportunity whereby individuals are motivated to change Gifts, Talents and Challenges - Adults with FASD 38 through the recognition and support of their strengths (Saleeby, 2002). A strengths-based perspective recognizes the danger when the "diagnosis or the assessment becomes a verdict and a sentence" rather than a starting point of appropriate support provision (Saleeby, 2002, p. 13). Attention to the positive qualities and capabilities, assets and aptitudes, dreams and goals, of the subjects under investigation directs the strengths-based perspective (Saleeby, 2002). For the purposes of this study, attention will be focused on the gifts and talents of adults with FASD. As a service practitictioner "working within deficitfocused systems of care," one can expand their (service provider) helpfulness and the hope of the clients by adopting a strengths-based perspective, which provides a more balanced and positive viewpoint, instead of focusing primarily on pathology (Saleeby, 2002, p. 107). This perspective affords the opportunity to acknowledge and develop what strengths are inherent within the individual instead of merely seeing the "label" of FASD (Ragsdale, 2006; Saleeby, 2002; Schmidt, 2005). This approach also adds to a positive conception of and interaction with the client which aides in a therapeutic alliance, a necessary component of change (Saleeby, 2005). Adults with FASD have often been viewed through a deficit lens, which has contributed to the development of secondary disabilities, which are not part of the initial handicapping condition (Ragsdale, 2006; Streissguth, et al., 2004). These secondary disabilities are primarily the result of the lack of understanding and recognition of this hidden disability by others, unattainable expectations, and Gifts, Talents and Challenges - Adults with FASD 39 the inability to conform to these (Lutke & Antrobus, 2004; Ragsdale, 2006; Schmidt, 2005). These secondary disabilities could include addictions to substances, mental health problems, and troubles with the justice system. The shift away from the "disease model" of pathology, dysfunction, and disability to the strengths perspective creates a paradigm shift focusing on resilience, health and wellness, story, and narrative which allows individuals to tell their own experiences and thereby change the perception of their reality. Service providers and others who interact regularly with adults with FASD can create relationships that focus on abilities and possibilities and through this paradigm shift to a solution focused approach, which has "an implicit and abiding interest in the strengths of individuals and families" (Saleeby, 2002, p. 282). The strengths-based perspective may also shift the perception that society is not responsible, and may help us realize the benefits possible when support, training, and appropriate services are provided throughout the lifespan to individuals living with FASD. Gifts, Talents and Challenges - Adults with FASD 40 Chapter Four - Methodology Qualitative Research This Gifts, Talents and Challenges: Untapped Potential of Adults with FASD study is qualitative and descriptive in nature, and will gather information through semi-structured interviews using a thematic analysis methodology. Qualitative research is "uniquely suited to discovery and exploration" (Rossman & Rallis, 1998, p. 63) and is interested in the meanings people have constructed about their world and their experiences in it (Denzin & Lincoln, 2005; Merriam, 1998; Patton, 2002). Qualitative data describes the time and place of the study from the viewpoint of the research participant in a way that allows the reader "to have been there" (Patton, 2002, p. 47). Qualitative research seeks to develop hypotheses, rather than test them, through looking at issues that are unclear, perspectives that are left out and assumptions that require further investigation (Auerbach & Silverstein, 2003). Qualitative research does not interpret difference as deficit because it assumes that differences, rather than uniformity, are the norm (Auerbach & Silverstein, 2003). It privileges the unique lived experiences of the research participants as the "experts" in their own lives and the task of the researcher is to understand the participants' viewpoint, rather than their own (Auerbach & Silverstein, 2003; Patton, 2002). Data gathering is often done "in the field" which means the researcher goes to the setting of the research. The strategies employed by this research to analyze data are inductive, and the products of this type of research are "thick Gifts, Talents and Challenges - Adults with FASD 41 descriptions" (Patton, 2002) which are likely to contain a great deal of information about the context and the participants, as well as documentation from other sources that will support research findings. Sample selection is often "nonrandom, purposeful and small" (Merriam, 1998, pp 6-8) with the researcher typically spending a good deal of time with each research participant. When doing qualitative research, the researcher, rather than a measurement tool or instrument, is often the primary research tool. The researcher is required to acknowledge and disclose their biases and values, which can be a valuable source of knowledge about the subject being studied (Auerbach & Silverstein, 2003). Qualitative Descriptive Research The goal of my qualitative descriptive study is to summarize events in a comprehensive way in the "everyday terms" in which they occurred (Patton, 2002; Sandelowski, 2000). This descriptive study stays "close to the surface of" the collected information and to the apparent intent of the words and events as described by the research participants, avoiding interpretive adjectives, unless used by the informant (Giorgi, 1992; Patton, 2002; Sandelowski, 2000). It contains facts that are thorough and without irrelevant clutter, yet strives to achieve rich descriptive detail so the reader is able to enter into the situation under study (Giorgi, 1992; Patton, 2002; Sandelowski, 2000). Qualitative descriptive research provides a description of what presents itself, without adding or subtracting from the data and focuses on "studying something in [it's] natural state - or as it is" (Sandelowski, 2000, p. 331). Gifts, Talents and Challenges - Adults with FASD 42 Qualitative descriptive research does not require the researcher "to move as far from or into their data" and does "not require a conceptual or otherwise, highly abstract rendition of data" (Sandelowski, 2000, p. 335). This process is low inference and the least interpretive of the qualitative analysis and results in a description of patterns or themes to help understand the content of the data, which is represented within its own terms (Giorgi, 1992; Sandelowski, 2000). Descriptive validity is ensured through an accurate accounting of the facts, as well as the coherent explanation of the meaning participants attribute to these facts. A "straight descriptive summary" is the product of qualitative descriptive research where the content of the data is arranged and described in a way that best fits the information and will be most relevant to the audience for whom it was written (Sandelowski, 2000, p. 339). A solid descriptive qualitative inquiry that is straightforward and carefully presented, with the appropriate level of detail, is likely to survive fads in reporting research (Wolcott, 2001). This qualitative descriptive summary is primarily valuable as a bird's eye view into the lives of adults with FASD, as seen through their own eyes, as well as through the eyes of their mothers and care providers, as I have gathered and categorized their information. This study could be an entry point for further inquiry into the complex lives of adults with FASD. Need for Rigor When doing research, there is a need to produce valid and reliable results while being ethical at the same time. Merriam (1998) believes that research needs to "ring true" to the people who are using the knowledge; in other words to Gifts, Talents and Challenges - Adults with FASD 43 feel confident that "the study is valid and reliable" (p. 164). Researchers such as Davis and Dodd (2002) redefine rigor, a quantitative term, to better meet the needs of qualitative research. They have suggested a set of ethical terms that define rigor as "attentiveness, empathy, carefulness, sensitivity, respect, reflection, conscientiousness, engagement, awareness and openness" (p. 279). This study was undertaken with this framework for rigor in mind. Caelli, Ray, and Mill (2003) also address the need for rigor when doing qualitative research, which is essentially descriptive. They emphasize the need for a "knowledgeable, theoretically informed choice" in regards to the researcher's approach to rigor, along with a philosophy and methodology that is "congruent" with their research. As such, Caelli, et al. (2003) assert that rigor is a "deeply theoretical issue, not a technical one" (p. 15). To this end, a critical, feminist and strengths-based philosophy fits very well with my research as it gives the opportunity for the informants to tell the stories of their strengths, as well as the challenges, of a disenfranchised and vulnerable population. Participants Adults with FASD, their mothers and formal service providers were recruited through my own personal and professional contacts using a purposive method of selection (Creswell, 2003). Care providers were selected primarily on a convenience basis, ensuring that each person had a number of years of experience working with adults with FASD. Adults with FASD were recruited through their mothers (natural, adoptive or foster) and care providers, who Gifts, Talents and Challenges - Adults with FASD 44 believed that their adult children would benefit and would not be harmed through the interview process. Participants in the group of adults living with FASD were included in the study on the basis of maternal drinking history and / or a history of suspected use by the mother along with lifetime difficulties associated with FASD and / or a diagnosis of FASD, which was given either by the mother or by the adult with FASD. Given the limited availability of obtaining a diagnosis of FASD in northern BC, a qualifying question about maternal drinking history determined whether the adult referred to by this study is suspected as having FASD. If the history of the adult was not known, they were not selected for this study. Qualified mothers and care providers must have cared for an individual who is now an adult and whose biological mother is known to have consumed alcohol during pregnancy. Efforts were made to include a range of socio-economic backgrounds, cultures, and both male and female adults with FASD were interviewed. Mothers included stories of their other children who had also been diagnosed with FASD. Two adults referred to by this research are receiving services from Community Living British Columbia, one of these adults was interviewed, and the other's story was included in the mother's interview. The same mother talked about another of her adult children with FASD, who had been involved with the criminal justice system. Participants from across the province were selected, with the vast majority of caregivers being adoptive parents. One of the adoptive mothers has fostered three adults with FASD, as well as adopted three others. She did not formally Gifts, Talents and Challenges - Adults with FASD 45 adopt three of the children, as she had respected the wishes of the natural mother by not doing so. However, this mother (adoptive and foster) has always considered these children as her own. Another participant is the natural mother of two adults, whom she suspects have FASD, given her own drinking history and their resultant problems while growing up. She believes that she also suffers from FASD based on the drinking stories she was told by her mother, along with her own lifetime struggles. Yet another participant, who is grouped along with the mothers and service providers, is an acquaintance of the adult with FASD, who stepped in to provide a home for her when she became pregnant and was unable to manage living on her own, simply out of the goodness of her heart. The adults with FASD are between the ages of 19 to 58. Most (9) live with their parents in a supported way, while others (8) are living independently. Altogether, fifteen people from 8 different families were interviewed, seven were mothers or care providers of adults with FASD, six were adults with FASD, and two were service providers who have or are still actively working with adults with FASD. As described above, one care provider was the friend of an adult with FASD, and who was providing a home for both the adult with FASD and her young son. The mothers and care providers represented 17 adults who have FASD. The two service providers have worked with a large number of adults with FASD over the years. Research Method A qualitative, descriptive method of research as described by Sandelowski (2000) was undertaken through face-to-face interviews consisting of basic open- Gifts, Talents and Challenges - Adults with FASD 46 ended questions asking about the gifts and talents of adults with FASD, what made it difficult to achieve their goals and what do they (adults with FASD) need, in terms of support, in order to achieve their goals (see Appendices A & B). Data Analysis The information gathered in these interviews was analyzed within the structural social work, feminist and strengths-based framework and was categorized using qualitative data analysis (Morgan 1993). Each interview was tape-recorded, transcribed and reviewed by the researcher to be sure that the content of each interview was complete, as compared to the notes made by the researcher after each interview. Morgan (1993) recommends immersion in the data through reading the material several times in order to identify patterns and explanations in this study of the traits and barriers that mark the lives of adults with FASD. This method identifies multiple patterns and themes of phenomenon within their context, describing the conditions in which they appear (Patton, 2002). These themes, categories or major findings displayed the perspectives of the informants through the inclusion of specific quotations that give evidence to these findings (Creswell, 2003). All interviews were compared to the researcher's field notes and then read a second time so that a general impression of the experiences of adults with FASD was obtained (Creswell,2003; Dudley, 2005). The coding began under the general headings of gifts and talents, barriers, and supports needed, which arose from the questions and coding was done within these categories. Coding was initially kept close to the informants' actual words to identify themes, which were Gifts, Talents and Challenges - Adults with FASD 47 sorted into over-arching patterns later in the analysis (Creswell, 2003; Monette, et al., 2005; Neuman & Kruger, 2003). These patterns were later aggregated into sub-categories and then later into broad categories, which resulted in a description of the findings. Another step in the analysis of the data took place when I reread each interview in its entirety and answered three additional questions about each interview: the main points of the interview, what I had learned, and what is important for anyone else to know? This information was later added to the discussion of the findings of the study. The findings of the research were sent to all participants and any changes have been incorporated into the final report. Each of the participants has been provided with a copy of this report, at their request. Comparing the field notes and the opinion of the informants ensures that the authenticity and credibility of these findings are accurate (Creswell, 2003). There are two basic approaches to thematic analysis, which are to first seek the statements that occur most frequently through actually counting them and/or, second, to look for marked statements that have great meaning for that informant (Luborsky, 1994). The method I used was to organize each relevant statement into groupings that had similar themes, with the most frequently occurring considered the most important emerging information, followed by those less frequently mentioned. This method fits the "straight descriptive summary" through organizing the most frequently occurring theme to the least and provides Gifts, Talents and Challenges - Adults with FASD 48 the most relevant information for its intended audience (Sandelowski, 2000, p. 338). The findings of the data have been described as accurately as possible, although filtered through my own cultural, historical, and experiential lens. These descriptions have been compared and contrasted with present literature describing the experience of adults with FASD (Creswell, 2003; Stake, 2005). These research findings suggest new questions or research topics that arise from the data, as little research exists presently which illuminates gifts and talents of adults with FASD. These new questions are discussed in Chapter Seven, under Implications for Future Research. Ethical Considerations This study was conducted following receipt of approval from the UNBC Ethics Review Committee, as well as the signed informed consent of each individual in the study. Research participants received an Information Sheet (Appendix C) that explained the nature and scope of the research in plain language that was readily comprehensible. Participants were asked to sign the Consent Form (Appendix C) that stated their agreement to participate in the research. In addition, this research adhered to the principles outlined by the British Columbia Association of Social Work Code of Ethics (British Columbia Association of Social Workers, 2003), which guides ethical social work practice. An informal discussion with each participant took place to ensure a high level of comfort was felt before the interview took place. Gifts, Talents and Challenges - Adults with FASD 49 Since adults with FASD may be considered a "vulnerable population" (Waldrop, 2003, p. 237), a cautious approach was taken. Although the perceived level of risk to a vulnerable adult was minimal, only the adults with FASD whose mothers were interviewed first, were included in the study. As described on the Consent Form, each mother had obtained her adult child's permission to speak about them before participating in the research. The adults with FASD also signed a consent form that was verbally explained. A discussion with each adult (with FASD) before their interview further allowed them to understand, question, or opt out of their own interview. Additionally, adult participants with FASD were selected on the basis of their understanding and comfort with their disability as well as having a high level of support in their lives. Confidentiality was assured as the research findings do not identify any person by their real name or use any identifying details of any particular story. The results of this research are a composite of all the interviews. All identifying information has been deleted from the excerpts and names used in the quotes are fictitious. Confidentiality was further assured, as the tapes are stored in a locked file in the faculty supervisor's office and will be destroyed after three years. Gifts, Talents and Challenges - Adults with FASD 50 Chapter Five - Results of the Interviews This chapter is divided into three sections: 1) barriers experienced by adults with FASD; 2) the perceived needs of these adults and 3) the many gifts and talents of adults with FASD. Each section presents the views of the adults with FASD first, followed by that of the care providers. Both mothers of the adults with FASD and service providers who have worked in this field for a number of years were interviewed and their views are included within the caregiver section as one voice. Only two service providers in this study receive any financial remuneration from their work with adults with FASD, as part of their employment. All other care providers do so out of the goodness of their hearts. By hearing the experiences of the adults with FASD first, the differences in perception between the groups will be demonstrated and the viewpoint of the adults with FASD privileged. All names used in the quotes are fictitious. Some of the quotes used are lengthy but contain voices that have not been heard or studied up to this point. Cutting down the length would have resulted in the loss of valuable insights and would contribute to the silencing of their experience. Some of the quotes have been shortened for brevity and this is indicated by three periods in most cases, however, this might also be when the person paused to reflect on their next statement. Barriers Experienced by Adults with FASD The first category examined is the barriers encountered by these adults as a result of having FASD. Some of their stories are truly heartbreaking as many of them have been misunderstood, humiliated, criticized, and put down in front of Gifts, Talents and Challenges - Adults with FASD 51 others for their perceived lack of attention, disruptive behaviors, and inability to "get it". A great deal of this misunderstanding has come from those of us within the helping professions. The invisibility of FASD and the wrongful interpretation of acting out behavior can create a climate of frustration, expectations that are much higher than these adults are able to achieve, and the inability to provide support in a manner that supports and encourages their best efforts. One area often mentioned is the school system, followed closely by the social services system, possibly due to the universal need for schooling by the children, as well as the need for some sort of social support, which brings those with FASD into contact with both systems. Another barrier described by these adults takes the form of secondary disabilities such as turning to alcohol and drugs, sometimes developing into addictions, as they tried to deal with their unresolved trauma and pain. Other adults talked about the difficulty of needing to have someone advocate for them, which contrasts with the societal expectation that, as an adult, they no longer need this support. Views of Adults with FASD Problems within the School System One adult described her experience seeking the extra help she needed when she was taking college courses: When I have gone for help, I have generally been brushed off, because I do well in school... I had a real hard time translating what the teacher wanted into... and taking it for me, the information that I knew I had and putting it on a piece of paper. And it happened to me a couple of times, and I've been met with anger and frustration and being brushed off and being told that I am, you know, not trying hard enough, or something like that. It wasn't the case, if I knew where my ... if I could identify where the Gifts, Talents and Challenges - Adults with FASD 52 problems were, then I could find ways to learn to deal with them, and maybe come at it from a different area... and rather than getting the support that I asked for or even the information that I asked for, I was brushed off. And I believe that is not uncommon.... for people with FASD. Another adult talks about her early experiences in school with the other children who did not understand her problems: Being bullied in school - every school that I have been in, I got bullied except for the last, it was pretty good, they take notes, talk to bullies... I still got bullied there. I got called names like "Forest Gump" and "retard" at the last school I went to. I got gum put into my hair one time and it was kinda like shoulder length long. I got, well, it was not school, but at Youth Group, I got punched by one girl in the face or slapped and a different girl brought locked me outside at the church Youth Group. This adult talks of the necessity of finding a safe place and person at school: Having a safe place to go at noon was good though at my high school... (I) Just walked around till the bell rang. At this one school, I had a lady that I knew and she was the candy lady and at lunchtime and at recess, we went into her office and gave every kid candy. She had a basket of candy and each kid got one candy and she was a good friend. Unfortunately, a negative school experience was common to this age group, which is predominantly between the ages of 25 and 30: They didn't understand why I had a hard time learning in school... why I wasn't getting what the teachers were saying or where I was coming from if I was explaining something. I was just different than everybody else. I just didn't understand at the same rate everybody else did and so because of that I was treated different so I always wondered why growing up, why am I like this and why can't I do better and.... I can only take in so much at a time before I get so overwhelmed... I just explode. This same adult tells more about her experiences in high school and later, at an adult learning center. She describes her inability to get the help she needed, although she fully recognizes the importance of getting an education: They didn't know what it was (FASD) but I explained it to them and they knew that I needed extra help and when I needed it explained to me, not Gifts, Talents and Challenges - Adults with FASD 53 done for me, like I was getting it done for me at the High School. That's why when I went to grade 12, when I turned 19; I quit the same day I turned 19 because I was sick all the time. I had way too much homework and I wasn't getting the help.... Another adult tells of her experiences in high school: I had problems with organizing time, what's going to happen a week from now, planning things...I had a struggle to learn to read. Figuring out which classes to take, teachers were hard, I didn't get one to one support. I didn't understand the work at all. Skipped a lot of school... didn't have extra support and didn't get what was going on. Didn't know how to ask for help. There was nobody there to ask—it was easier to not go to school than to figure out who to ask for help. Yet another adult describes her experiences and her ways of coping with school: I didn't do great academically. My learning disability really plagued me throughout school...I wasn't able to pay attention for any length of time. My ADHD was a problem, but also I had very high anxiety all the way through school and I think that was also part of my depression. That was before it was kind of diagnosed and before I was on medication to stabilize that. Secondary Disabilities The second most common problem described by adults with FASD was the secondary disabilities that consisted of problems in their interpersonal relationships, poor boundary definition, the ease of sliding into an addiction and the resulting devastation to their lives and those around them. Problems with interpersonal relationships are described in the following ways: I had a lot of social problems... So I would just say things or do things and I would constantly get negative feedback and then, I would of course internalize that and that would affect my emotional (state) and self-esteem. So I had a lot of trouble with that growing up. But at the same time, I battled with it like, again and again and again. And I constantly got into trouble and I wasn't understanding why I was getting in trouble. And even if someone explained it to me, well, I'd retain it for, you know, a day and then I would forget again. Gifts, Talents and Challenges - Adults with FASD 54 Another barrier that is described often by adults with FASD is the ease with which they slid into addictions and the devastation it caused them, and their loved ones: As I got older, with all the emotional pain I would feel, I would tend to, I ended up turning to drugs and to drinking... and that killed the pain... And so I turned to drugs and to drinking as I got older and then, of course, that progressed with the depression. So that's kind of my way of dealing... that was my way of dealing with stuff. ... I just had no emotion... and I also, it increased my anger and I had very., umm .. rage spouts too, and after a while, it kinda scared me. I thought, if I continue like this, I eventually would end up in jail and I wouldn't have a family and that. So, that's when I kinda said, "I need to turn my life around. I need to... just change everything and start a new way or I am not going to survive..." Another adult tells of her childhood trauma that led to her addiction and the personal work she has done in her life as a result: I'm sure that my own alcoholism has made my life more difficult than it needed to have been. The trauma that I had growing up, sexual abuse, rape, physical violence, emotional violence, poverty... but a lot of those things have become positives in my life because of the work I was forced to do in order to survive. So those things have definitely had an impact and definitely made my life more difficult, but on the flip side, because of the work I have done to get around those things, my life is much richer than it would have been had I not had those things happen at all... Another adult talks about his unresolved grief and loss issues, which he believes led to an active alcohol addiction: ... I had certain behaviors and certain needs that weren't met. So when things weren't happening that I needed and the support wasn't there sometimes, I would react through behaviors, and then I would be labeled a troublemaker and whatever else... I would act out and fight with people. I was pretty angry... the reason was my sister and stuff like that. That sort of lit up the angry part, although being an "outsider" kind of thing. This adult is referring to a situation where his younger sister died when he was about 10 or 11 years old. His mother believed he was labeled as having FASD in Gifts, Talents and Challenges - Adults with FASD 55 school because he was First Nations, although he did not receive any extra support. Need for Supported Employment Another significant barrier to well being is the lack of supported employment and the ability to be gainfully employed. Adults with FASD are in a double bind because they often need a modicum of extra support, but if they ask for it from employers who do not understand, they run the risk of not getting hired. If they do not ask, they run the risk of being fired when they have difficulties with learning the new and unfamiliar tasks. Having an employer who is willing to support them in learning their jobs and making allowances for their special needs is a rare find, but adults with FASD often make exceptional employees due to their many fine qualities. One adult describes her experience with an unfamiliar situation that was devastating to her and led to her being dismissed from her position as a cashier: ... I never felt so humiliated and embarrassed in front of a customer because I wasn't shown how to do it and they weren't showing me properly or taking the time to go ... "Ok, if you screw something up, this is what you do to take steps quickly to undo it so you can do it properly". It's no... you just deal with it, figure it out later... This young woman tried another job at a fast food place with similar results: No, they didn't understand and I just said, "I have FAS and I have a harder time learning. I'm slower and I need a little more help... explained to me," and she's like, "Oh yeah, I understand that", and I said, "Please don't repeat this to anybody because I don't want the other workers knowing and I don't want to be treated differently but I just need more help", but she let it go in one ear and out the other and they had a system where it was a buddy, buddy type deal and a lot of them... I just couldn't handle it all. My arms were like covered in burns (from working at the fries station and being too short to not get burned) and I couldn't do it any more. Even Gifts, Talents and Challenges - Adults with FASD 56 if I tried to do something else by that point I was so frustrated and angry I just had to get out of there. Unfortunately, even working in a supported environment can have pitfalls, as the following story illustrates. The supported work staff insisted on paying the young woman with FASD for less hours than she actually put in: I only got paid for two hours and I worked like maybe six hours and I came home with blisters on my hands, and I went, "Oh, Gee! If I didn't work, would I have blisters on my hands, if I didn't work my butt off that day?" Her mom has this to say about that particular situation: So they were going to pay her for only two hours, even though she'd been there six hours doing yard work... They are supposed to be job coaches with adults with special needs. But they didn't see the special need with Nancy. Lack of a Diagnosis and Recognition of FASD Finding out that FASD was the cause of their difficulties was a great relief to all of the adults I interviewed as it explained the problems they had encountered throughout their lives. One adult states that knowing that he had FASD was very important as was learning not to use it as an excuse and a crutch. This particular adult thought he was "stupid" before he was diagnosed which may have contributed to much of the anger in his life, which led to rages and the downward spiral of an active addiction. He eventually learned how to overcome his anger and has been actively working on his recovery through abstinence and learning about his alcoholism and FASD. He believes that having a diagnosis allowed him to name the problem and work at overcoming the effects of the disability as much as is possible. Another adult expressed the same sentiment: Gifts, Talents and Challenges - Adults with FASD 57 It was an inner feeling, I was feeling, you know, I am different. You know, people look at me different, people treat me different. And I wasn't able to put a name on it and say what it was, but I felt it... But yeah, I think as a child, it wouldn't really make a difference. Now in my teens years and in my twenties, it (having a diagnosis of FASD) would have definitely made a difference, I think... Manifestations of FASD The most obvious barrier to these adults' well being is the expression of the disability itself. They described many problems that were a direct result of having FASD. They talked about their "inability to concentrate", having "anxiety in situations", being a "hyper-sensitive person emotionally, I tend to take things very personally" and physically, "I feel pain more intensely than other people". However, as one mother pointed out, some adults with FASD do not feel physical pain as intensely as others do. Other manifestations of FASD included feeling like an "outsider - not very social with people", and having "no self confidence, no self-worth... I just thought I was stupid". It was not knowing that "the little pieces that are missing for me to be able to, you know, for me to be successful in school" and in having problems "with interacting with other people". Need for Advocacy These adults mentioned that they needed the help of other people to get their needs met. One adult described the need to have someone with her when she is undertaking difficult situations or decisions: For me, I prefer to have Anne or Howard come with me just so I know what I'm getting into. And if I don't understand, I don't feel like an idiot and go say "I'm not understanding this, I'm not understanding this so", because it's really embarrassing trying to go do things by myself and when I want to do them and not understanding what they are saying. So a lot of the times I just say, "yea, I understand", because I don't want to keep Gifts, Talents and Challenges - Adults with FASD 58 bothering them and saying, "I don't really understand. You know, I'm just not getting it," even though as hard as they are explaining, to say "Yeah, ok," and I just do the best I can and just say, "Yeah, I understanding", when really I don't... Views of Care Providers The barrier most frequently mentioned by care providers in regards to adults with FASD is inadequate support systems that continue to plague their adult children. This is particularly alarming due to the high level of interaction and need that children and adults with FASD have for support services. Care providers reported a lack of understanding by professionals that the behavioral manifestations of FASD are an indication that there is an underlying brain disability. The inability to see some physical manifestation of FASD is a barrier to these individuals because visible markers give some explanation to the casual observer as to the possible explanation of difficult or unusual behavior. The invisibility of this physical brain disability and the lack of recognition of the needs these people have is one of the largest barriers to being able to get whatever services may be available. The stress of difficult encounters with service providers leads to further alienation and misunderstanding between the helpers and those who need their services. One service provider explains it this way: I think it is a lot of work to provide services and I think there is an unwillingness often to really recognize how all-encompassing one person's needs may be, right? So I think that that barrier is because we have a lot of resource cuts and a lot less resources to go around... the other thing I think is, the amount of stress that is produced by having to deal with some of the agencies can severely effect how well a person can function when they are out in the community. However, then the individual behind the counter might not recognize that what they are seeing is performance anxiety and they might see it as a very bad attitude... So Gifts, Talents and Challenges - Adults with FASD 59 their services are, they are not a friendly or as nice to the person, which just increases the whole cycle of blame and shame. There is little recognition that FASD might be present in someone who has no obvious physical indicators. Many people with FASD do not know that they have it themselves, which makes it that much more invisible. They know they have problems and always have, but don't know why or what to do about it. The presence of this condition is evident in behavior, which is generally attributed to poor upbringing or an internal flaw of the individual, rather than what it truly is, an indicator of a brain disability that is a lifetime injury. Care providers and parents expressed concerns for the safety of these vulnerable adults, as they sometimes demonstrate an innocence that makes them susceptible to being taken advantage of. They talked about the burnout factor they all feel and the fear of the future when they are no longer able to provide support for their adult children; and all lament the need for support. At present, there are no adult assessments that are universally accessible and / or affordable. Children and youth are able to access paid assessments as of January, 2006. However, diagnosing FASD in adults is very difficult due to the confounding factors that make a definite diagnosis virtually impossible to make. Most diagnosis in adults would be "suspected" rather than "confirmed". Care providers tell stories of how few services there are and that they are often staffed by inadequately trained personal who have little practical knowledge of FASD. These service providers think they understand FASD, but inadvertently, can do more harm than good for these adults when they do not Gifts, Talents and Challenges - Adults with FASD 60 provide the kind of support that offers choice, opportunities for self-direction and respect for their unique abilities. Parents talked about being labeled and blamed for the problems their children faced - being told they were over-protective and spoiled their children. They also talked about the extra expense of raising their children, such as the need for counselors who truly understand FASD. They also talked about the need to keep their adult children busy in productive ways through volunteer activities, which took a great deal of time and money. One parent told of a trip down south to see a child who had been incarcerated and she was turned away at the gate, because her adult child did not fill out the proper documentation. There was no understanding that this individual was not able to follow through with the documentation without help. The parents talked about the expectations of independence in our society that has a set time frame within which "successful individuals" grow up and leave home, which further stigmatizes and humiliates these adults who need the extra time to "catch up". The care providers involved in this research have gone far beyond societal expectations to support, encourage, and instruct their children. These parents know from hard experience that there are few understanding people or resources that they can look to for help. Their stories indicated that few of us - counselors, psychiatrists, doctors, social workers, teachers, and others - "get it". They stated that there is a great need for education of these experts - education provided by the people who have FASD themselves, and those who are close to them. Care providers reported the need for society to Gifts, Talents and Challenges - Adults with FASD 61 understand the permanent nature of this disability, along with the acknowledgement that there is great potential and the ability to thrive, provided there is early intervention, proper supports, and the continual provision of a positive connection to a supportive environment. Inadequate or Non-Existent Support Systems This story was told by one of the support providers about the adult with FASD in her life and how the following situation resulted in her getting involved in this young woman's life. The young adult with FASD was offered support from a child protection agency to raise her newborn child, but the nature of the support did not meet her needs and resulted in her losing her child to their care. She did not understand that when she asked them to take her son for the afternoon, it would turn into six months: System things, yea its just... I don't think the systems have evolved enough to see where the proper supports need to be put in. Like I said, everything is 9 to 5 and people don't have crisis in that time. In this particular case, the mother was able to regain custody of her son after a lengthy court dispute in which she agreed to live with support providers, neither of whom were relatives, nor friends, just good people. These support providers receive no money to provide care for the mother or her young son and have done this out of the goodness of their hearts. At present, the support couple share custody of the child with the birth mother. The struggle with the child protection services almost resulted in the permanent loss of her son, and only the interventions of care providers allowed her to take him home. Gifts, Talents and Challenges - Adults with FASD 62 The following story is of another couple that lost custody of their child due to services that were not explained to them and that did not support them in the way they needed: Joan's got another friend... (who) had fetal alcohol syndrome. Him and his girlfriend had the baby and I think, (after) six weeks their baby was taken away and there were no supports put in for them. Now they may have said, "No we don't want any supports but that's what I mean, were they told about the consequences? If you fail at this, we're going to come and then take your baby so you either take the supports or you take the risk of losing your child." Now he says he wasn't told anything of the sort and that if he'd knew that, he would have taken support services... The lack of support extends to many areas of the home and the community: Our students just didn't have the support. They didn't have the support for many reasons, you know, they may have come from a family where maybe the mom has FASD as well and she is not capable. She loves her kids but she can't support them in the way that there needs to be the support. Maybe there are addiction problems in the home. Perhaps they have been from foster home to foster home. People didn't know about FASD... Well gee, I don't think anybody in our class, except if they have been assessed or diagnosed, has been to a psychologist. Then they have missed out from birth, really on getting the support that was essential and by the time we get people as adults, you're filling in... that you're just trying to make their lives better that's going to, in a way, that you can support them for the rest of their lives but it's not actually going to change their capabilities. That's not going to happen. Whereas if you can get support from when they are young and you can (work at) building on those strengths from that point, I see that as making major changes, but in our situation, I think it's like Band-Aids. School systems appeared to be inadequate for these research participants because of a failure to recognize students with FASD and the lack of financial support for specialized staff that understands children and adults with FASD. There was a lack of recognition that they can benefit greatly from environmental adaptations, rather than behavioral modifications aimed at changing the individual. Gifts, Talents and Challenges - Adults with FASD 63 At present, within the school system in British Columbia, there is no extra support provided for children and adults with FASD, although in some areas, extra support can sometimes be accessed based on behavioral descriptions. There appears to be no formal recognition that FASD is a permanent brain disability that makes learning more challenging, but certainly not impossible. Parents in this study told of the need for a place of protection and support within the school environment, and some suggested separate classrooms for their children, which they believe would have allowed them to learn about their disability in a supportive peer group. All of the adults interviewed talked about their very difficult school years -- trying to fit into a school system, which was painful and difficult as they struggled in the mainstream. One care provider had this to say about the barriers her children experienced within the school system: The expectation that gets in the way is that a person is going to be able to do an incredibly good job today that they did yesterday, all by themselves. We ask people in school to learn everything independently... And so the put downs, the making fun of the corrections that are negative are incredible hindrances. The expectation that doesn't take into account the brain injury and the specifics of the brain injury like not being able to bring to mind what you know when you need to use it. I understood about short term memory and long term memory and memory difficulty I thought, until I watched the testing with my guys and saw what working memory means. That especially under pressure, if you don't have the answer when you need it, you can't find it. The filing system doesn't work and somebody is on the other side saying, "Yeah, you know it, you know it, come on let's do it, let's do it, push," well, go away. How incredibly frustrating and humiliating that is and deliberate humiliation is another huge roadblock. On one of the panels (done by adults with FASD), the whole audience and the whole panel were all in tears as one of the guys described an experience in grade 4 classroom where the teacher had held up an exam and said, "Yeah, he told us he studied, look at this, he got a 9 out of 100, that's what he calls studying, what a stupid..." and just totally humiliated this guy on purpose and it stuck with him for years... Gifts, Talents and Challenges - Adults with FASD 64 Another care provider has this to say: ...in the school system with the teacher's aides, something as basic as that, I mean the fact that they... whoever's got seniority gets the job and bumps from one place to the next and to me that is one of the basics with our kids is that they don't adapt well to change. And it is really frustrating when you see that within the school system,.they can't even see that far, you know, that six teachers' aides in the first three months of this kid's school year isn't going to do him any favors. I don't know, to say the system is a hindrance, but to me there is a lot of "very stuck in the mud" people as well. But, it's a motivational issue, to motivate this kid, smarten up his mother, and maybe he can learn... Our whole society is a hindrance, I believe... Or the expectations of our society. Speaking about the effects school has on a child with FASD: The emotional damage that the public system gives the child, I'm sure, helps trigger any of the teenage stuff that you go through. They get so beat up, so down, lacking self-esteem just from the feedback that they get from the minute they get into school from the time they get home. That brings up the other issue of, I believe, that brings up the issue of teen violence... It started somewhere. It started with someone getting bashed around so much that they just stopped caring. By the time they, you know, became a teenager they are like, "I don't care, if I get in trouble, who cares? You know, I'm in trouble all the time it doesn't matter like.... People hurt me so I'm ok to hurt other people", so... Another mother tells of the social problems her child encountered along with a curriculum that was totally inadequate for her child: One of the biggest problems was that no one understood FASD, even though she was full FAS. We did not get the understanding when we came back from getting the diagnosis. She had absolutely zero help in school. They absolutely refused to help her. She did not meet the criteria for anything, absolutely anything here... Once she went into the high school, then we had enormous problems socially. And the bullying, and the small (private) school, the kids got better and better at bullying in silent ways or in ways that were not picked up by the staff, which was actually quite good. It was things like spitting on a chair and having her sit in it and she wouldn't know. Or - gum in her hair and horrendous things... So then we pulled her out of that school and put her in the public system again. I drove her quite a distance to a school that had a "no bullying" policy. Well, again, it worked for a while, but academically, it was atrocious. She was basically sitting in a classroom doing nothing. I had to Gifts, Talents and Challenges - Adults with FASD 65 pull her from that school, too - several schools. She stayed until the end of grade twelve, but she didn't get anything or most of it was wasted time. Another mother tells of a similar experience with her son: There was only a few people within that whole system that really got him, that really understood. He was labeled. He was judged.... "Lazy. Didn't care. Didn't want to. Wasn't able to be..." Yea, the teaching methods, the support in the classroom... He would get overwhelmed and then they would just think he was lazy, that he didn't understand it, that he wasn't able. "We've taken him as far as we can take him." The fact he looked so normal, right? And he could talk your ear off but that was his way of getting out of it. "If I just keep talking to them, they'll be ok and they'll leave me and then they'll lay off." This following statement was made by a mother who knocked on every door imaginable to get help for her daughter: So there have been people like that along the way that wanted to learn, but the ones that didn't were causing us more damage. Like going to a counselor, going to counseling to deal with anger issues, huge anger issues that Nancy had so that she and her sister could hopefully have a little bit of peace, which is, we just have never gotten the right counseling. People would, the counselors would use way too many words Nancy doesn't understand. Words that were way above her, she didn't understand, but they would be adamant that they did, even though I would say, "She's not understanding you." "Yes, she is", and then they would ask her to say back what they had said and she could repeat back, but it didn't mean that she understood. But they would take that at face value that I didn't know what I was doing or talking about or... that overprotective parent. We've had professionals tell us that we've spoiled her... The following mother tells a heartbreaking account of her son's encounter with the child protection system that failed him, even though their mandate was to protect him. He had been living on the street after the living arrangement with her broke down. He ended up in the criminal justice system and spent six months in a special work camp that helped him deal with some of his issues. When discharged, he specifically asked not to be put in a group home: Gifts, Talents and Challenges - Adults with FASD 66 So all that was presented to (a child protection agency) with more than enough time and the day he graduated, was the day they said "Oh, gee, we don't have any place for him to go." So they stuck him in a group home. Yeah.... Umm. The (child protection agency) doesn't understand... what to do within the legal system, a lot of the same thing, of not understanding, not willing to listen, not willing to understand. We're just going to get this through, to get it over and done with as fast as we can. And yeah, so what if he spends two years in federal prison, not a big deal. And he went to federal prison with all but FASD stamped onto his forehead, all of his files, all of his records, all of everything that went with him. And his teacher that he had when he was in jail, told me that she went back specifically to look, and there was nothing on his prison record that said FAS. And I went all the way to Aggassie, is it Aggassie? to see him and got stopped at the gate and was told I wasn't allowed to go in because he didn't do his visitors papers. He can't fricken do his visitors papers. Every system failed him, every system out there failed him from lack of knowledge or lack of willingness to recognize, to change, to accept... During the interview, the mother explained that the above-mentioned adult was not adopted as a child because of an agreement with the mother who wanted to retain custody of her three children. This adult was told by his social worker when he was 14 that he did not belong and was not part of the family he was living with and that he did not have to listen to his foster mother. He was told that there were different rules for him. His foster mother was told that she had no authority over him, which quickly escalated with him dropping out of school, living on the street and getting into criminal activity. He is still battling an active addiction and living a marginal existence after being rescued off skid row. Up to the present, he has not been successful in a treatment center or a supportive recovery house, as he has been asked to leave because he does not understand their rules. Gifts, Talents and Challenges - Adults with FASD 67 Unfortunately, the misunderstanding of FASD by service providers is all too common, as told by a different mother, in a different city: They just didn't get it and they wouldn't listen. And they wouldn't change, but they were more of a hindrance and more harmful to our family than they were worth. So when the job coach would tell her that she could make her own decisions, and she did not have to listen to her parents anymore and she was right out of Grade 12. That did so much harm to our family. They would tell her things like "You can drive if you want to", "It's your decision, not your parents", and we knew that she gets hit on her bicycle, we don't like her to ride her bicycle in traffic because she gets hit, more than once... A lot of them were job-coach type people that were supposed to be finding her jobs, or job prep or some of those kinds of things... Because she doesn't look like she has a disability, their expectations were far too high, but that is the philosophy that is out there. They teach it at the college for human resource workers, that you know, that adults with special needs, can make their own decisions. They can make their own mistakes and they will learn from them. And I am sorry, that is not the case with FASD. Or many others... I mean, this is ridiculous! "If she wants to drink, that's ok." How can that be ok with someone with fetal alcohol syndrome? But she was encouraged, "We'll take you to the bar, Nancy. We'll take you to the bar, and by the way, you're going to take the bus home," as if she isn't already vulnerable enough. Secondary Disabilities - Care Providers Secondary disabilities are those that the child is not born with, but develop over time as a result of having FASD, such as mental health issues including addictions, problems with the justice system, and others. One mother sums up her experiences with systems when trying to get help for her daughter who was suffering from depression and was suicidal: The school system, the medical system. Every system. There wasn't one system that could help us, not one system that knew how to help this child. No psychiatrist, she suffers major depression. She was having a couple clinical depression episodes where she ended up in the hospital and she was 16 for one of them and I cannot remember anyone inviting us in. Well, they weren't allowed to. The law says anybody over 16 has the right to privacy. I know, but that's so stupid. Here's a child who needed Gifts, Talents and Challenges - Adults with FASD 68 some help and the parents needed some help to understand why the child needed some help and we weren't informed of anything and we only got informed from Stacey who couldn't quite remember half of the stuff anyway and fabricated everything else because of the stress she was under. I'll always remember this is, the... what do you call it? The Alice in Wonderland aspect of it. I remember she was going into depression... We said we've got to bring this girl in. She is suicidal. "Well, after she commits suicide, you can bring her in." You can't bring somebody in who's thinking of it. Another mother tells of a similar experience with her son who was also battling an addiction to alcohol and a desire to hurt himself: He made a few attempts (at suicide) that didn't work and then he had a huge episode where he was totally inebriated and he tried to kill himself again and walked into the water and... It was awful. It took quite a few people to actually get him into an ambulance and he was just vile and so they thought he was on drugs and ... but again we wanted that treated seriously... Secondary disabilities create considerable stress and pain for the adults with FASD, along with their families. Both of the previous families attribute many of the secondary disabilities to childhood trauma, as many of the adults with FASD in this research have suffered difficult circumstances as children through abuse and/or neglect before being adopted or fostered. The parents in the study talked about their adult children struggling with grief and loss as a result of their childhood trauma. One mother talked of her children living in fear for years that a social worker might come to take them to a new home. The mother states that when someone the children did not know would come to visit, the son would show the visitor the cupboards that had lots of food in them, just in case the visitor might be a social worker. Gifts, Talents and Challenges - Adults with FASD 69 Parents describe uncontrollable rages and power struggles with their children, along with boundaries that are non-discriminatory and sometimes lead to unsafe choices. They describe inter-personal relationship problems especially with significant others, the destruction of property, criminal activity, a lack of faith in oneself, and problems relating to others. Other difficulties their adult children experience included reading social cues, lack of impulse control, addictions to alcohol and/or drugs, and attempting to deal with their uncomfortable feelings through self-medicating and occasionally, suicidal ideation. The parents also describe an inability to plan and set goals, which one mother attributes to a lack of faith in oneself and one's ability to achieve perceived goals. Need for Supported Employment - Care Providers Supported employment was the goal of most of the adults with FASD who participated in this study. They wanted to achieve the independence and autonomy of their peers. One mother tells of her son's success and need for ongoing support at work: Work was really hard. He did well where people knew him. We got him his first job at a fast food place because we knew the boss and that became his social outlet. McDonald's - he then transferred there. He loved it but they didn't know what they needed to do to support him to keep moving him forward so he just sort of spun his wheels there. He did the same thing over and over again and he wouldn't try anything that he was afraid of, as he was afraid of screwing up. The repetitiveness he loved at McDonald's but then he found a niche and that was it.... Front counter where he could meet all the girls. Lack of Identification and Understanding Care providers in this study stressed the need for proper identification of FASD so that it could be recognized as the source of the problems in their Gifts, Talents and Challenges - Adults with FASD 70 children's lives. Identifying that an individual has FASD provides a starting point in the search for answers and tools to help them cope with their situations. One service provider believes that failure to identify this problem could be due to the overwhelming needs of adults with FASD and society's ability to overlook these needs when they are hidden from view: I think it is a lot of work to provide services and I think there is an unwillingness often to really recognize how all-encompassing one person's needs may be, right? So I think that that barrier is because we have a lot of resource cuts and a lot less resources to go around. ... on many levels, society does not want to deal with the disability and the fact that the disability is invisible makes it easier for society not to deal with it... Well, I think it is resource deficient, plain and simple. Another source of problems identified by the participants of this study is service providers who have some cursory knowledge of FASD, but do not have the ability to recognize it when they are confronted with someone who has it. Because the condition is very difficult to spot with casual interactions, most adults with FASD are unrecognizable, which creates negative judgments of them by service providers on occasion: ...all different levels and accuracies of training from half hour workshops to week long academic training that then gives people the idea that they know something about fetal alcohol but they still can't recognize it because they haven't had the experiential piece. I used to say it's like taking flight training and you pass the ground school and you do all the book work and you go back to the school and they hand you the keys to the 747 without any hands-on experience. Maybe a more appropriate analogy is - would you have somebody cut your hair that has learned to cut hair out of a book? So many people think they know about fetal alcohol because they heard it or read it in a book or they studied it online and they can't recognize it because it's invisible and inaudible. They don't recognize it with the person who has it and that's another big roadblock with fetal alcohol. I came up with that phrase today. It's not only an invisible disability but an inaudible disability because so often expressive language sounds right on. They look and sound just fine but the Gifts, Talents and Challenges - Adults with FASD 71 processing and the language processing and the receptive language is so severely compromised and that's unlike anything else unlike what we expect and so the understanding from the person on the other side of it is a huge roadblock. One mother tells of the difficulties this invisibility has caused her children in the past: Oh, the invisibility of their disability. The people who stood in their way because they refused to recognize that this is a brain disability.... Teachers, social workers, probation officers, RCMP, judges, lawyers, where do I go from there? Camp counselors, boy scout leaders, whatever the heck they were, yeah, boy scouts, we got kicked out of there, brownies, we got kicked out of there, where else were we kicked out of? Oh man, I don't know. I remember being told by the college years ago, that there was a likelihood that Nora would fail at the course that she was interested in taking, and they wouldn't take her because they don't want failures on their records. So if there was a likelihood that you would fail, they didn't want you. "And we didn't want to do any adjustments and we didn't want to make anything easier" and I don't feel that that has changed enough yet. Unfortunately, the lack of accommodating special needs of adults with FASD tends to be the norm. There continues to be a lack of knowledge about the abilities of adults with FASD. One care provider talks about her frustration with the foster care system and the lack of education about FASD: It discourages me that the, that, ok can I say it? That the Ministry social workers, who have, who are the guardians of our children, who have the final say, for our kids, don't know didley squat about FAS and what our kids are living with and the supports that they need. They just don't see it, they don't get it. And I'm tired of hearing, "We're really busy and we have a really big case load." All of our kids are important; they're not disposable, that our kids aren't a caseload, that our kids are individuals. And if people would learn that the more they learned and understood about this disability, not only the easier the kids lives would be, but their lives, their jobs would be a lot easier, as well... Another service provider recognizes that this disability is very hard to spot, even for those who have been working in the field for many years: Gifts, Talents and Challenges - Adults with FASD 72 Just not recognizing the invisible disability is so.. It is so invisible and the families can present themselves so very, very well... you just kind of catch yourself and say ok, what is the brain based behavior, right? It's me, though, who doesn't catch it.... So if you have a parent who presents with a lot of really lofty goals and so on, because they are presenting really well, you may just want to think that they can do all the things, like sure they'll do homework every night, blah, blah, blah... rather than saying, you know, what we are going to do is really, really small steps. So it's (our) inability to be really direct with them and really understand the disability that presents a barrier. A mother talks about how the lack of recognition at her son's school kept her from finding out how to help him: The fact he looked so normal, right? And he could talk your ear off, but that was his way of getting out of it. If I just keep talking to them they'll be OK and they'll leave me and then they'll lay off. Pejorative Labels This barrier coupled with the lack of knowledge about FASD came up over and over again; it was the most often mentioned source of problems that parents and care providers described. An example of this is: People just tend to label people with FAS and then they just sort of write them off as not too bright and they will never change. It seems that a little knowledge can be more detrimental than none at all: I worry about a lot of the teaching that is going out there right now. I worry about how much this stands in our kids way, when we have "facilitators" that take a day and a half of training and then advertise themselves as being the experts or FASD facilitators and go into our outlying communities or even our agencies here in town and they offer information that is crap. It does no favors for our kids whatsoever. It closes a lot of doors to those of us who do have accurate information. But more than anything, it hurts our kids cause as those doors are getting closed, our kids, there is less information about our kids that's going out there. So I think that that's a really big hindrance to my family. Not only lack of information, but what's out there is often poor... Gifts, Talents and Challenges - Adults with FASD 73 Inability to Advocate / Expectation of Competency Many parents and care providers talked about the difficulties they encountered when attempting to advocate for adults with FASD. They talked about the privacy laws that do not allow them to be a part of significant decisions that can affect the people they care for: I'm working right now on PWD (Persons with Disabilities) for my two daughters... We're part way through the process already, and I look at how difficult that is and what a help that would be to my kids, but think about other kids that are out there, as well, who wouldn't have a hope in hell of making they way through that form or figuring out what to do on that either. So lack of recognition of a lot of our kids and the supports that they need, the handholding that they need a lot of the times to be able to work themselves through the systems that we have. It's a big hindrance... It's worse within the legal system, within the criminal legal system... with the RCMP. "Those guys are adults and need to be treated like adults", and they're not. Yeah, my boy that is on the street right now in (a large city) who I talked to last night... is 24 going on about 16. Developed slower, always has, always has. And that is very typical with our kids. I have all young adults in here now, and from a distance, I have "old teens" not "young adults." Not understanding that the functioning age is not necessarily what the chronological one is. And then our kids "age out" at 19. Which is probably for a lot of them more like about 13. And I have a big mouth and I can fight my way through the system to find when I want, a lot of our kids don't have that and they don't have that support behind them. So they go from being a kid in care and having money handed to them to living in the ditch someplace. It just doesn't work. Another mother talks about the advocacy and support she has provided her daughter in order for her to be busy and productive: ... What I did during the teen years is I kept her very busy volunteering. A lot of the times, I volunteered with her, because again, people didn't understand her and had expectations that were too high... The mothers and care providers listed other barriers the adults with FASD have encountered. These items may not be obvious to others but can present a real Gifts, Talents and Challenges - Adults with FASD 74 difficulty for individuals with FASD. For example, there may be a lack of understanding about the fee structure when signing up for a cell phone. As a result, the adult may play video games for many hours, and then be confronted with having to pay for a significant and expensive amount of air time. Another example might be an inability to organize a bowling game for others even though the adult has bowled for a long time and is very good at it, or not having the hygiene skills to brush one's teeth or put on clean underwear even though the skill has been taught to them for many years. Other barriers parents spoke about include the rigid thinking that sometimes accompanies FASD and the inability to generalize learnings from one situation to another, or to discriminate how rules may apply in one situation but not in another. Another manifestation of FASD that parents said caused considerable concern for them was their children's vulnerability to exploitive people that sometimes put their own safety and that of their children in jeopardy. One care provider talked of a young woman who was more concerned about getting her friend's children on a city bus and almost left her own young son on the sidewalk. The "wanting to please" aspect can be a double-edged sword for some adults with FASD. The general lack of knowledge about the prevalence of FASD, even by those who deal with the disability the most, has resulted in a lack of information for foster parents or those who adopt their foster children. These parents are often not given the maternal history of the child or any detailed information about how the child came to be in care. Conversely, some parents have run into prejudice and assumptions that because their child is of aboriginal descent, there Gifts, Talents and Challenges - Adults with FASD 75 is a higher likelihood of FASD. This prejudice and discrimination kept one mother from seeking a diagnosis sooner: ...when he was in high school people assumed that's what he had (FASD) since he's native and I was quite adamant that that wasn't true but also I was more concerned about the judgment piece that went along with this but I wasn't really wanting to go there, but then I happened to work at juvenile detention at the time, nursing and knew the psychiatrist...(who did find her son had FASD, but this racial prejudice kept her from seeking solutions sooner). Care providers talked about the many social problems experienced by their children throughout childhood and well into their adulthood - which drained them (care providers) financially, emotionally, and physically. For example, one described the need for on-going monitoring in terms of personal safety for her adult child, given that her daughter has problems with distinguishing if someone is a real friend or just a casual acquaintance, as happened one day when she brought home someone she had just met on the court house steps. Many parents stated concerns for the future of their children once they were no longer able to provide the extra support their children might need, especially due to this vulnerability. As suggested by previous quotes, some parents spend many hours keeping their adult children busy volunteering when they are not able to find gainful employment. This activity speaks of the ongoing monitoring and organizing that some adults with FASD need to be productive and useful to society. Another barrier is the frustration of working with professionals who really do not understand the need to modify language and expectations, as was suggested by the mother whose daughter needed counseling but was not Gifts, Talents and Challenges - Adults with FASD 76 understanding the meaning of the language used by the counselor, although she was able to repeat back to the counselor what was said. Another care provider talked about her son having difficulty getting organized and double-booking appointments or forgetting about them altogether. This behavior is typical due to the differences in chronological age and adaptive functioning skills of adults with FASD. Parents talked about their concern that using IQ as a marker for receiving support services left the vast majority of adults with FASD out in the cold, despite their much lower Adaptive Functioning scores, in some cases. Another barrier providers were concerned with is the extra cost of supporting adults with FASD in terms of recreation and other activities; for example, enrolling them in swimming, piano lessons, and a host of other expenses. Needs of Adults with FASD The needs of adults with FASD are the next category of information derived from the interviews. Views of Adults with FASD Changes in Perception Some adults with FASD have had very difficult experiences and said that they would have been better served by knowing what was causing their problems and by knowing that they were not "bad people", as one adult puts it. The adults with FASD talked about the changes that are needed to reduce stigma in communities and the school system: Gifts, Talents and Challenges - Adults with FASD 77 I think what would have also made a difference is having other people who are like me in a sense of learning styles, being able to be around other people who maybe had disabilities and also, I mean, you can't change things, but back then, I think also if disabilities and that weren't such a stigma. You know, if they weren't considered such, like a plague, "Oh, get away from me, you are just weird", kind of a thing. And I think that was the biggest struggle that I had, is that I had that; I couldn't run away from it. I knew I had it and knew I had to deal with it, yet there was no escape, because you know, everybody considered it odd. And I think living and growing up in a really small, small community wasn't really helpful. I know there were good times about my childhood, lots of good times, but just the learning was very difficult. Adults talked about the need for special recognition and supports within the school system, to be grouped with peers who had the same disability and could work together to overcome challenges. They described the need for programs that are more accepting of curriculum modifications to accommodate the learning needs of adults with FASD, rather than doing the work for them: I was in a modified class and I would go to regular classes but I would have a TA there with me and so I had other kids that had disabilities and if we couldn't get it, they would just do it for us. They had the same work we did, the same book and they'd write the answers and then they would say, "OK, here copy it", instead of you know, taking the time to say, "OK, this is what you do, this is how you do it." They would just either do the work for us or they would do it themselves and have us copy it, and that wasn't helpful. Another adult tells of her experiences with schooling as an adult: I think it got a lot easier when I hit college. I started to get into programs that were more adaptable to people with disabilities and that really helped as well. Being able to take, say, a course in two years instead of one. That really makes a difference and to really just manage your work, cause then you just do it and you have more of a sense of accomplishment. Then you are more motivated again to just keep going. Another adult with FASD believes that specialized classes would have been helpful for her: Gifts, Talents and Challenges - Adults with FASD 78 I don't know, but I don't think the public school or private school, the normal classroom is not the place for FAS children. They need their own schedule, their own program, their own small feedback organization, and specialized people to work with them, maybe a school just for them. A school that has different programs for them and a school that can almost adapt to their needs. Like if their, say for example, if there are kids that have trouble in the morning, rather than like say penalizing them and say you know you get an F or you drop out or you whatever and you don't show up say, "OK, there is a reason why this person is not showing up, how can we accommodate that so that they can still be well?" Because its not that they can't do well, they just might have different, you know things like that. For me, like I said, I only found a lot of success when I hit college ... Another adult tells of her experiences in school: I needed more help in school and more people who understand what FASD is. I asked for help sometimes but they didn't understand and did not help. I was told I was being lazy and I feel bad about myself and felt talked down to. Education and Understanding One adult with FASD talked about the necessity and the luxury of having her adopted mom and dad who stuck with her throughout very difficult years and what would have happened to her had it not been for them: Well, I think that a big part in my growing up and me ending up where I was... my family and my family support. And being taught how to love, how to respect, how to share, all those things. I didn't know any of that. I was even as basic as, I didn't know how to express my emotions. And part of that was, of course, you know, the abandonment issues... I think that I would have ended up on the street. I think I would have ended up as a street worker or I would have ended up in jail (had I not been adopted by my mom and dad). This same adult talks about her need for ongoing support when she was living independent of her parents: ... When I started living on my own even when I had my substance abuse problem. I used to have someone come in and, you know, even help me how to manage my money... I didn't know how to budget so if the rent Gifts, Talents and Challenges - Adults with FASD 79 didn't get paid, I was at a loss. I was like, well, I don't know why. I assume you make thousands of dollars... Diagnostic and Assessment Services Another area mentioned by the adults that was of great importance was having a proper assessment and a diagnosis of FASD, which gave them the information they needed to know that they weren't "just stupid." As one adult put it, having the knowledge that she had FASD enabled her to ask for help and sometimes get it. Two other adults talked about getting proper medications that have helped them: ... The earlier you can get it (a diagnosis) done the better. I definitely say that it would have been quite a bit more easy years if I had had a diagnosis earlier.... Oh, yeah, there were certain things that were good after that. After a diagnosis, I was able to get, you know, limited amounts of stuff; there was assistance, like a longer test time, some other stuff. For me, it changed things because it put a name on what I was struggling with and it gave me a lot of understanding like things like when I was told that people with FAS or FAE don't comprehend cause and effect, you know, when they do something, they don't really know the outcome. You know, when they do something bad, they didn't do it purposefully, they don't know what is going to happen... Understanding that explained a lot growing up. One adult with FASD suggested creating an assessment tool that would help identify problem areas, which would benefit those with FASD as it might suggest strategies to help them overcome their own particular manifestations of this disability: And it sure would be helpful to have some sort of assessment tool. So that you can identify the areas of weakness, so that you know exactly what it is you are working with so that people can take measures. So that if I know my memory is really bad, if I know that it's really bad, I can take a notepad with me and take notes. But if I don't know that's what's wrong with me, then I don't know what it is I need to do to help support myself, to make things better. Gifts, Talents and Challenges - Adults with FASD 80 Specialized Education There is a need to educate adults with FASD about the connection between FASD and the resultant living problems, including addictions. This education would also benefit service providers, foster and adoptive parents that the incidence of addictions in adults with FASD can be common: ... As far as the addiction goes, and with FASD, a lot of parents who aren't equipped to have their child, whether it's financially or emotionally, to invest the time, these kids do get thrown by the wayside. Because their parents hit a spot where they say, "we just can't deal anymore" - and then the kid's gone. So, and it's unfortunate that I think, basic, absolute, when it comes to adoption, people really have to think about, you know, adoption, it can be beautiful, but you know, it's not a glamorous job. "And am I willing to do what it takes?" Supportive Employment The adults with FASD talked about wanting to have supported employment and employers they could be honest with, without fearing they would not be offered or would loose the job if they asked for the special support they might need. One adult with FASD reported the need to have a "support system that is available for people who ask for help - people who know what they are talking about. People who can role model successfully - role modeling and mentoring." Another speaks of the importance of the encouragement she received from her mother who: Made me feel like I could do something. Encouragement and pushing me has helped. I lived with it (FASD), I understand it - I know how to get around it. Supported work environments that truly understand FASD as a hidden and unrecognizable disability are uncommon, as the following excerpt points out: Gifts, Talents and Challenges - Adults with FASD 81 No, I didn't get help, I got told what to do and I was supposed to do it all by myself. And I had never housecleaned or did that work before but they wanted me to do on my own so they (job coaches) didn't help. A number of adults expressed the desire to go to college and have paid supported employment but have run into difficulties with the curriculum and the work requirements. It is very difficult to find employment that makes allowances for the special learning needs experienced by some adults with FASD. ... I'm on call actually right for my job because it's just not busy but I can't have a job where it's on call because I have to pay for (my son's) daycare and support him and so I would like to get another job or go to college and I've always wanted to go to college and so I would like to take classes where it will help me to get a good paying job and so it's a long term job and I could be successful at a job... Well I needed someone to work with me like we had assigned partners and then that partner would just leave and do something else and I was stuck on my own. (It would) Help not giving me so many other jobs to do at once, as well as, or explain to me while you're doing this, this is what the top monitor means, this is what the outside is and as well as, doing the fries. I had to get all the orders for the front end to drive thru and I had to look at the monitor and know what it was doing and I couldn't do it, and here I thought I could. I wasn't fast enough so sometimes I'd be looking outside at the monitor and doing the fries and then I'd burn myself and I thought enough. I can't. I was not... I didn't get to do the cashier test because by that time, I had quit. I had enough. I couldn't have done it. Another adult tells of her desire to get paid for her work as she has been a volunteer for many years and is very good at what she does: (What I'd like is) A paid job, because it doesn't help, when you volunteer, you don't get paid... right now I don't get paid at the (Senior's Residence) Place and I would like to take a course at the college, which would be pretty hard for me because the classes at college are too hard. You'd have to learn how to bathe them and stuff like that. Gifts, Talents and Challenges - Adults with FASD 82 Addictions Treatment and Medications A number of adults with FASD that were interviewed, identified that they have been in recovery from an addiction to drugs and/or alcohol for some time. They identified the need for specialized treatment that is culturally appropriate: I went to (treatment center), up in (community in BC). It was a wonderful experience, I loved it. Very cultural, very healing, yeah, I liked it. And also up there, I discovered a bunch of things, I learned more about smudging and praying. And I got to attend different ceremonies, a sweat lodge. And as a result, I did a lot for my healing inside. Another identified need by adults with FASD is for appropriate medications: One of the big things, I mean, I say this a lot, that really made a difference for me was the medication, the Concerta, and it really just helps the bit of a chemical imbalance in my brain. It's helped with my mood and everything and just being able to sit and concentrate and having just the anxiety in situations lessened has helped. Yeah. I think that is what I was trying to do with the drugs - I was trying to find a balance you know, chemically, that I just didn't have. Views of Care Providers Care providers also identified similar needs but expanded on them exponentially. The care providers described the need for an appropriate and truly supportive circle around these adults that could provide support through their lifespan. The care providers also described the need for specialized treatment that is culturally appropriate, for respite services for families and for a shift in perception by service providers to understand that support for adults with FASD must be long term. Gifts, Talents and Challenges - Adults with FASD 83 Changes in Perceptions - Care Providers The care providers identified the need for better understanding of this disability and the importance of advocacy by care providers. One parent puts it this way: They need time and they need the fact that they need more time to be OK... Time and the acceptance that it is OK to take extra time to do whatever it is and to branch out and when they go fast and skip over things to be allowed to do that too and then to come back, to work at their own pace. They need a home. They need a place of rest, of acceptance, of value, of respect - where they can rest and use as a home base. They need attachment. They need some alcohol and drug treatment programs that understand the brain injury and don't throw people out for immaturity or lack of memory, or lack of being able to sequence and organize and get places on time. Employers that are willing to and able to look beyond and observe and understand where (these) people are coming from... They need people to listen to their parents and respect what their parents know when they are being healthy so they need healthy parents... Support Services There is a need for financial support that is provided based on the adaptive functioning of the adult with FASD rather than on their IQ score: That IQ is useless. It's absolutely useless and so many things are based on it and we're just missing the boat totally for people. How can you expect someone whose adaptive functioning is about 6 years old to live in an apartment on their own? Another parent speaks on the same topic: I was just devastated to find out in June, and this is 2006, let me think for a minute, 1990, was when Nora was 7, and they tested her IQ and she had her IQ tested at 73 and 70 was the cutoff and they said " No there would not be any services for her" because the difference of those 3 points in there. And to find out it was May or June (in 2006), when a 7 year old here in town, he tested 70 right on the mark was what his final score was and the school board told his grandmother that, no, it had to be below 70 before he could get services.... Gifts, Talents and Challenges - Adults with FASD 84 One participant suggested that support be provided as a matter of course, but that it also should be tied to educational opportunities, part-time work, and a healthy lifestyle, which enhances self-esteem and empowers people. Another suggestion is to provide semi-independent living with lifeskills support, which provides safety and the basic necessities. Such supported living is also affordable and provides an environment where these adults can catch up with the independence skills that take longer to master: ... I think we need to have housing. We need to have some kind of housing, homes for people with FASD where they can live and get support 24 hours a day but they still have choices so it's not as if somebody is there or looking over the shoulder the whole time that they can come in and speak to someone when they need the help. This need for help is particularly important for adults who do not have a connection with their families as is expressed by a care provider who ran a program for adults with FASD for a number of years: The first year of the program at Christmas time, we tried to prepare the students for Christmas. Christmas is really difficult for everybody, you know, who has disabilities. I shouldn't say everyone. Some people have great support and it's a happy time. Very few though, in our area... It was very difficult for lots of people because they live in poverty and all the problems... Anyway, all that was hard, so the first year we tried to prepare and we went through the newspapers looking for what could you do that's free in the community over the holidays so they could go and listen to concerts and they could listen to music or whatever. We did that but when I came back after Christmas, a number of people had attempted suicide and it would happen every year. It was just that particular group but it was enough to make us realize, we need to do something so we then had put in place that for one hour per day over the holidays, except for Christmas day, Boxing Day and New Year's Day, there would be somebody in the classroom and there would be somebody to do something with. They could come and do a craft or they could do an activity of some kind and I think it made such a difference they don't even need to use it... Gifts, Talents and Challenges - Adults with FASD 85 The same care provider suggested supported activities for adults with FASD to encourage healthy relationships and to provide direction for those who are struggling with independence: For people with FASD, maybe it needs to be more (support)... noon until 11:30 or something because there is different hours sometimes. You know it's hard to say or whatever their issues are. If they need more activities in the evening so they won't go to those ones downtown. School System The need that was mentioned most often was change to current support systems, especially within the school system, which seemed to cause a great deal of difficulty for the adults with FASD in this study. The care providers talked about the damage to the self - esteem of the adults with FASD, as a result of their school experiences. They also suggested changes that would benefit individuals with FASD within the school system, especially in regards to the provision of services and support that are required by these individuals. They believe that there needs to be a fundamental shift to focusing and optimizing what they can do, rather than allowing them to struggle along the best they can. The following parent talks about her frustrations with getting help for her son some twenty years ago: And the people that are in those helping professions don't have the information either, like there has not been enough work done to learn about this. It's been a hidden thing that nobody's wanted to talk about and with my son, I've mentioned to every teacher that he had... that he was probably FASD and I was just basically brushed off and there was, you know, either they didn't know or they were too busy. But I can see where, had they (her two sons) been treated differently, then their lives would have been different too... Gifts, Talents and Challenges - Adults with FASD 86 There is a need for the school and other systems to formally recognize that FASD is a disability. Unfortunately, this is a medical problem that is complex and difficult to obtain which makes obtaining extra supports and training hard to access. Specialized training for staff requires extra funding, which strains the education systems beyond their capacity. The hidden part of the disability negates the necessity of the extra support and training required. Here is one story of a young adult with FASD in school: ... in grade 11, she did get support and finally put into a special needs program - where the staff may not have understood her but they were kind and considerate and realized right away that Nancy liked to help. She was a good helper. So they were absolutely amazing and again, when she is surrounded by people who are positive, that girl absolutely blossomed. So grade 11 and 12, we saw her doing better than we ever suspected possible. Not great academically, but behavior-wise. She couldn't walk down the hallway without being teased... One mother advocates that schools also must be a safe place where children and youth with FASD are encouraged to be the best they can be: ...So someone else has to start to be specifically trained, this (FASD) is not like any other disorder and they have to be trained on how to do this to be successful with the FAS individual. They need that person at school, not every teacher needs to be trained in FAS, but they have to have at least one or two people to go to, they need quiet zones at school, they need safe zones so that when things are overwhelming, they can go to a safe, quiet room to be able to do their work or just to calm down, or to get control of the situation... I believe in special classes for this population. One in a hundred, there is certainly lots of kids there in every school that could; it could work for them, and so many others. So many others, especially, the ones not identified. Another care provider talks about the need for an advocate for the child with FASD: In the classroom, the kids need to know that there's one person that isn't going to automatically assume that they are at fault whatever happens... Gifts, Talents and Challenges - Adults with FASD 87 one person that they can count on to actually watch and observe, and be their ally. They don't need that person to work with them; like we don't have to set up a TA for every kid, in every classroom that has fetal alcohol. They just need one person there that isn't going to say, "Something went wrong -- it must be his fault." Parents talked about the need for teachers and school systems to revise their teaching methods when their children were in the school system, along with the environment to optimize the capabilities of individuals with FASD. They also wanted recognition of what they are doing to help their children: ... they are using learning theory or behavior modification or they say things like, "Have you tried a homework book?" When the homework book was tried six years ago and it's in place and that is working but what's not working is the memory - or what's not working is the chaos in the classroom or what's not working is that the concepts are too abstract or that there's too much noise or something like that... Those are the roadblocks. Other roadblocks are when people blame parents for not being good parents. Not teaching the right things and not demonstrating. So often I hear teachers that haven't been around families with fetal alcohol say, "If only they read to them", and then when they are around them, they say they do read to them. "Oh, now I understand, it's something else"... but it's that lack of experience..." Care providers argued that early interventions and support along a continuum are conducive to the best outcomes for adults with FASD coupled with it being financially prudent and wise in the long term. One care provider believes that special classrooms might provide the environment that would provide optimal support to individuals with FASD: I think early intervention is really paramount... Early intervention, support, awareness and with all of those things, I'm just presupposing that they are going to get the things they need in school. I mean, if you had all of that, school would be a place that they would be able to succeed not in the usual sense of success, but they would be able to succeed and feel they would be going at their own pace... They'd be finding their own strengths and building on those strengths and there would be support in the community where they would be able to... again their strengths would be Gifts, Talents and Challenges - Adults with FASD 88 recognized and they'd be able to participate in things where they felt good about themselves and so if that starts at an early age, I think it makes a big difference.... I would really like to see special classrooms. I know that is against our policy in B.C. but I at this stage in my life, I kind of have gone back and forth on this from as long as I have been teaching, sometimes I'll think, "Oh, yes", and sometimes I think, "Oh, no", but in Winnipeg there is a school where there are classrooms for kids who have FASD. I have been at conferences where the people have spoken about them and I have talked to those individuals, with the instructors and I just see that as being way more beneficial than what we do because we don't have the personnel in a classroom to work with kids. We don't have the materials that are necessary in each classroom and so I think if we had special classrooms for kids with FASD and that continued right up throughout adolescents, I think that would be really helpful. Another care provider tells of her more recent experience with the college system that seemed unwilling to accommodate her daughter's desire for post-secondary training, possibly because her daughter does not appear to have a disability. She also tells of her children's experiences in the elementary system, which took place more than fifteen years ago: I talked to them about the supports that she would need (to go to college) and the fact that she would need a longer time, that she couldn't take notes, and they basically said, "Well, why are you even asking if she can't do those things?" And I said, "Well, there are ways of making those things work, like, give somebody a piece of carbon paper and when they write their notes, they will have a copy for her. Give her extra time on her exams and give her a support person, somebody who could be a scribe or be a reader for her." Nope! No! It wouldn't be there for her, it wouldn't be available; it wouldn't be fair to ask somebody to have to do that... We need better recognition in school as well as to what is going on. We need better adaptations, I know watching Nora getting ready to go write the provincial exam and if she had to do it all with her hands, she's pass it, not a problem... Pushing our kids from one grade to the next, I'm right tired of seeing that already. Not recognizing their abilities, focusing on what they can't do, writing lEP's, [Individualized Education Plans] as to "what we are going to teach this child to do by the end of this year"... about what the school needs to learn about this child by the end of the year. So I see the school system as a real hindrance in there for a lot of our kids - you either get everything or you get nothing. (My son's) disability was recognizable, and I'm not saying he shouldn't have got everything he got, but you know, Gifts, Talents and Challenges - Adults with FASD 89 there was my 7 Vz year old going down the driveway with a lap top with a voice in a little briefcase, banging off his ankles as he's getting on the school bus and Nora got nothing... Another mother tells of her daughter learning to read at a specialized school that worked with children with disabilities, something she had been unable to do in any previous school: And actually when she went to the special school... When she got to Grade 8, we decided that she needed special help but not high school and so we researched (name of the school), all the alternative living schools and every one of them I saw no, no, no I saw the social systems....you just know it wouldn't work and an "off the wall" school called Stacey and they took her and for two years, I know it sounds bizarre, but when she finished the school I found her reading which she didn't do up until that point. The specialized program worked for the previous adult with FASD. Another care provider demonstrates need for an environment that works with this disability: ... I think the school has not recognized that the teachers have a real need to understand disability and what it looks like... the other piece is using the environment appropriately so that families can learn... So there are all of those barriers to ... because people don't want to believe that the environment plays a huge impact, and there seems to be a little sort of resistance sometimes in society to make those changes. Like people want to believe that we need an environment that is stimulating and motivating and we are saying on the other hand, "No, no, that's all wrong. " So it doesn't seem, it seems hard to find a balance between what one group in society wants and another group in society needs... It's like really making solid brain-based arguments for services and environments and teachers' abilities and other professionals' abilities to give you the things you need. Education and Understanding - Care Providers There care providers spoke of the need for education about FASD, along with practical strategies for teachers and staff at schools to recognize and support these individuals, as the behaviors associated with FASD can be Gifts, Talents and Challenges - Adults with FASD 90 extremely challenging. They also wanted the recognition that they can be "experts" in this field as they have been dealing with these individuals for a much longer time than the teacher has. However, many parents are also not aware of this issue and have many problems dealing with FASD in their children. Practical strategies for dealing with individuals with FASD are needed, along with a team approach to implementing the same. The following quote illustrates a different approach to supporting professionals to deal with individuals with FASD: I like looking at the idea of talking with our young people (with FASD), instead of just talking about them. Involving them in the process of what's needed. Yeah, and seeing our young people and their parents and their families as being the experts... All the way across the board... I find it quite amazing that I can go and advocate for someone else's family and be the "expert" but if I go with my own family, I'm just a parent... Altered Expectations Care providers suggest the need for altered expectations and the understanding that adults with FASD have challenges that are going to last throughout their lifespan: ... she isn't successful. They really want to believe that and so do I, I would love it. No one would want that more for her than my husband and I, I would love it. But it is not reality. And we need to know that, you know, it is ok if she has lots of jobs, it's ok if she has lots of living situations. She just moved out on Friday. It's ok if that one only lasts a month, then you go back to the drawing board, then you find another one, or she comes back here. But we have learned that it's ok. We just keep on, so its paths are changing... This same care provider argues for the recognition that FASD is a condition that lasts throughout the lifespan and may require extra support throughout individuals' lives: Gifts, Talents and Challenges - Adults with FASD 91 Recognition that FAS or FASD is a very serious, life-long disability that has to be recognized as special needs, special education has to be funded appropriately, has to be funded life-long. It isn't going to go away. As adults, they require even more supervision because of all the safety issues. They require supportive housing, they require supported job placement. And it is ok; there is nothing wrong with that. And the sooner we believe that as a community, the better off they (the adults with FASD) will be at accepting it... I think that once we accept that there is a niche for everybody and it doesn't have to look the same... These people may never be independent, and that's ok.... There is a place for them in this whole society and there is value to who they are and there is something they can do with their lives. With the proper understanding of this disability, there is a change of perception regarding the difficult behaviors sometimes displayed by these individuals: Because the differences they had would be seen as just differences, not just bad behavior. And the difficulties that they would have had would have been seen as something that needs either extra help or different help with... rather than as them just not doing their work. The care providers identified a need for adults with FASD to receive accurate information that is strengths-based so that they are able to recognize the challenges they face along with the understanding that they are not without positive qualities. They can be assisted in understanding that they have challenges to overcome but are not without hope. Often adults with FASD do not know the cause of the difficulties in their lives, as was demonstrated by one adult with FASD who found out that she has this disability sometime in her late fifties. She talked about the need for her adult son to have accurate information also, as he too is unaware of having FASD: Knowledge... having more people know about it and the more it's talked about, the more it will be accepted as a... you know, we all have strengths and weakness and we are all different in different ways and this is just a (disability)... something else that doesn't dehumanize them or turn them into retards or idiots or people who can't learn, will never... You know, Gifts, Talents and Challenges - Adults with FASD 92 everybody needs some support in some areas of their life. Right now, he (my son) needs knowledge about his condition and how it affects him and he needs support, he needs people around him that understand his condition so that he can learn new ways of doing things, because some of the old ways of doing things are not good, they don't work for him. One care provider credits the changes that are currently happening as coming from the bottom up: I think it's what bothers me when I think about, and I see these things (at the FASD Conference) and what's going on in the lower Mainland and certainly it's not happening for everybody. I mean they have lots of people but we're not seeing those people in the lower mainland that have fallen through the cracks. We're seeing people who have had support, generally. They have the parents and because it's a grass roots movement, those are the people that have made the changes, are the foster parents, (natural) parents. It's not coming from up here. It's coming from down here and so they want to make it better for everybody but their kids are so important to them that they're push, push, pushing from the bottom to make those changes. Diagnostic Services and Assessment Services - Care Providers The provision of diagnostic and assessment services would make this disability visible so that the needs of these adults and their families could be identified and brought to the attention of policy makers. It would raise awareness as to the number of people that are affected and might begin to identify real solutions to the problems created by FASD in their lives: I would fund services for people with FAS. That would be, I would say, what is needed, and include it in the DSM and they really need the diagnostic clinics up and operating and services need to be determined. Services need to be attached to the assessment, otherwise it does not change a child's life: Five out of six of my children have a diagnosis, those diagnosis came from the pediatrician here in town and some of them were as old as fifteen years old... But they weren't diagnosed to give you a lot of information, it Gifts, Talents and Challenges - Adults with FASD 93 was more of a label that was stuck on this kid's forehead, which was ok in that we needed a place to start, but they weren't informative diagnosis. We looked for diagnosis once the kids started school... As stated earlier, some individuals with FASD do not know the source of their difficulties: Quite a few of the teachers, when (my son) would get into trouble at school, his brothers and sisters were told to leave him alone to fight his own battles, so basically, you know, the thing is that I realize now, is that he didn't understand what was going on with his fighting, cause he would punch kids so that they would chase him, and the teachers thought he was being a bully or aggressive or whatever. He wasn't, he just wanted to play and didn't know the proper way to engage people ... Another mother tells of her puzzlement with her daughter's problems before she was identified as fetal alcohol affected. She knew something was different about her child but did not know what: From the time we adopted her, there was always some signs of something not quite right with the visible sign being ADHD. That wasn't a diagnosis and we knew nothing about FAS at the time we adopted her, but by the time she got to Grade 1, she was seeing a psychologist because of learning difficulties and social difficulties and everyone just said it's a learning disability... and then we started watching TV programs on kids with FAS and so did my older children and they phoned me one night and it was the first documentary on a child with FAS. My daughter phoned me and said, "Mom, I think this is what Stacey has," and we all thought that's what she had, but yet, nobody, no psychiatrist, nobody would give her that diagnosis until... and she fit it like a glove, PFAS - which is partial FAS, and she is fairly high functioning and that's why it's been so difficult... Another mother talks of the importance of an assessment tool that might have identified the areas in which her son was having problems: I just thought he would outgrow the awkwardness, the social awkwardness that he had because I didn't realize that it was something that he really needed help... The fact that there is no assessment tool made, that's given to people where you can start looking at where the weaknesses are, so you know where they need help is, you know, cause I can see now, Gifts, Talents and Challenges - Adults with FASD 94 there were all sorts of times where he needed help in certain areas, where before, that I didn't know and there is still that. Healthy Support Systems A care provider talks about the need for a healthy circle of supports for adults with FASD: Just human relationship... somebody to care. Matthew P's mom said at the conference a couple of years ago, "Take somebody, an adult you know with fetal alcohol out for coffee. Just take someone out for coffee".... Somebody just to let them ground... and grounding is a huge piece of what adults with fetal alcohol still need. They need that somebody that they can come and no matter how big they are, sit with and cuddle up and just breathe and ground and say, "Now I know who I am." One of my guys says to me, "When you are not with me, I forget who I am". I spend 3 to 5 hours a week on the telephone with the oldest of my adult children as a dad and (he) does very well being a single dad but he needs that grounding. It's not about big stuff. It's just rambling. He's just got to ramble. He's got to know that there's somebody there... Paradigm Shift One care provider tells of the primary need to see adults with FASD as capable individuals who have the same hopes and dreams as anyone else, but with a hidden disability. She envisions a way of relating to adults with FASD that will provide the best possible environment for success: Respect relationship, you need to get past just knowing what FASD is you have to understand and build relationship. And we can have amazing relationships and we have very productive wonderful young people in our lives. And we need to quit talking about them; we need to start talking with them... They are amazing people. Care providers talk about a paradigm shift that begins with getting to know individuals with FASD, by forming relationships with them and accepting that they have something to offer: Gifts, Talents and Challenges - Adults with FASD 95 I think I'm just so pleased that people are taking FASD on and it's becoming more known. It's not going to stop. These people are not going to stop living with FASD. It's just going to continue... the ones that are in our class, the ones that are coming up. We are going to try to reduce the numbers. Everybody saying that's what we need to do, that it's preventable. There are babies being born with FASD all the time and we just can't afford to be ignoring it. We need to do something about it... If we don't provide any support for them, we can't just please them for nine months and say, "OK, now you have a good baby, away you go..." It's... the whole thing needs to change. We need to take these people in. We need to protect them. We need to support them. We need to give them what they need and then they won't be having babies because they are getting their needs met in a better way. We can't keep doing what we're doing and think it's going to change and put all this money into preventing babies being born. It's great but it's not going to work.... I think we need to look at alcohol in society. I mean that's a tough one because I like a glass of wine with a meal and so sometimes people just don't want to look at that. Its just part of our fabric of our society and it's going to be really hard... So part of the paradigm shift is to recognize that FASD is not going away and that supports cannot be short-term if they are truly going to make a difference. Presently we are sustaining these adults through financial support that is punitive and stigmatizing, through incarcerating adults that are involved with the justice system, and through taking their children into care, which perpetuates the cycle. Another service provider talks about the needed shift: The other change that has to be is that it is lifelong, there is not quick fix in our programs and they are designed to see someone for 10 months and you are done. Along with providing lifetime supports for those who need it, there also needs to be recognition of the adults' with FASD ability to change and grow as is demonstrated by this quote: ... it didn't take her long to decide she wanted to have a baby... First, she had wicked morning sickness. She had gestational diabetes and the worst hemorrhoids I have ever, ever known anyone to have. First, she Gifts, Talents and Challenges - Adults with FASD 96 had a rough time and she would be saying, "I can't do this any more, I can't do this any more", and I would say, "You are doing it, Joan. Right now, you are growing cells and that baby is growing". We saw (her baby) at six weeks and six days and his .little heart was beating... and I said, "You're doing it. You are building cells and your body is building that little baby right now", and then she would say," I guess I am." She quit smoking and she didn't drink any alcohol and she stayed healthy and a lot of that was because she had a stable environment. Along with the recognition of potential of adults with FASD, there needs to be some way to develop, encourage and maximize their natural talents and abilities: Just a really important point for you is that each child with FAS has what we call this potential and its up to everybody involved to find out what it is and it may be just one little area or 2 or 3, but you've got to find it and you've got to develop it and everybody has it, especially those working with these people. Also, with kids with FAS involved, it is important to recognize that you don't (always) see it (their potential). They all have needs and wants and hurts and everything. You don't always see it but it's just that they are hiding it and one day if they are treated right, it will come out. Care providers gave many instances where the right supports allowed the adults with FASD to bring out the "hidden potential" that the previous care provider talked about. Specialized Treatment Programs Care providers spoke of the need for specialized treatment programs that make the connection between FASD and addictions. They said that present treatment programs rarely work for individuals with FASD, as these individuals often are not able to move at the pace of the other participants. The rules in treatment centers are incomprehensible for some adults with FASD, which creates the misunderstanding that they are non-compliant, unmotivated and unwilling to change. In addition to this, the length of treatment is a barrier to this Gifts, Talents and Challenges - Adults with FASD 97 population because it is often too short and does not address the issues of appropriate, affordable housing after they return to community, along with lack of employment skills, or lack of familial support once they leave treatment: They need some alcohol and drug treatment programs that understand the brain injury and don't throw people out for immaturity or lack of memory, or the lack of being able to sequence and organize and get places on time. One care provider tells the tragic story of her son who has spent time on skid row battling his addictions and the lack of appropriate services for him when he was willing to accept some help: I would want for him right now, a recovery house, a treatment center that is going to understand who this young man is, look at issues far beyond the drug addiction. I would look at where he has come from; help him look at where he has come from. Help him to look at where he has fallen down as well, and all in a way that he can understand it... He needs structured supportive living, he needs ... like a therapeutic roommate, somebody that is going to be there with him all the time, do things with him. He is capable of doing a lot, but he needs help and structure. When he lived in semi-independent living, he did really well, because there wasn't constant supervision, but there was enough structure in there that he was able to function and to do well. There needs to be the understanding that he may never graduate beyond that point... He may need somebody to do that structuring for him for the rest of his life. He needs an education... He can't be told that he has only got six weeks to be there. Or two months to be there, he needs some place that he can stay for the next twenty years if that's what he chooses to do. And someplace that he doesn't have to leave and they will give him something to do so that he can feel like a productive human being again. Another element mentioned by some participants is the need for connection to culture in treatment centers and other educational opportunities: I think one of the pieces that has helped him move forward was his time in the First Nations Family Support Court worker course and I'm not sure exactly the component, whether it was the way they taught because it was native teachers or being immersed in an environment with other natives, I'm not sure which but it was extremely beneficial for him. It grounded Gifts, Talents and Challenges - Adults with FASD 98 him. It helped him so much but educationally they really focused on what he was able to do and he got loads of praise and loads of recognition for anything he completed and anything he contributed.... it was also the way they taught and I kept saying, I was just being tongue and cheek and said, "You know, native school is what we should all have because it was much more focused on strength and ability." They didn't care if you could write that sentence properly, it was what your sentence was saying... That year was really good for him. I'm not sure specifically which components but I think everything contributed. He learned about this nature culture and they did native history. They did a lot of learning about culture... It was a pretty phenomenal year for him. Advocacy and Support for Families The time and effort some care providers put into helping the adult with FASD can be consuming and overwhelming, as well. One mother tells of the one to one support her daughter needs to enjoy special occasions and events: She's not allowed on track and field anymore because of her attitude, but if she is with coaches that provide enough supervision and enough understanding, and positive, positive, positive, she does well. She hasn't done so well on trips. Again, she really needs a lot more support emotionally on trips; she's a little girl. Big adult, size wise, but very much a little girl and they do not have enough support as far as helping her emotionally on trips. So where she really needs someone, one person to rely on, they don't provide it. You have to be an athlete, other people with special needs seem to do well, but she does not. So she will have meltdowns and breaks, you know, she just falls apart and then she starts yelling and screaming and she will never get to go again, which has happened in bowling and softball and.... This same mother tells of the struggles she has had learning how to support her daughter in a variety of ways, especially as an advocate for her daughter: (She needs) The understanding of people. She needs really qualified specialists in FAS. It is different than anything else. It is totally different. We need people at Special Olympics that understand FASD. They don't all have to, but there has to be someone there who is like an aide for Nancy that really gets it and can interpret what is going on for other coaches and can interpret what is going on for Nancy and can advocate for her in every single situation, whether it is Special Olympics, or at a job Gifts, Talents and Challenges - Adults with FASD 99 site... The advocacy is ridiculous; it's absolutely ridiculous because there are people who just do not want to know. This same mother talks about the need for a mentor and an interpreter to help her daughter flourish in her outside activities: They need case workers that "get it". They need advocates that help the caseworkers to be an advocate. I would put in mentorship programs as soon as possible, so that she has a mentor at school, she would have a mentor wherever she is, it doesn't have to be the same one. But she needs a mentor and an advocate in every situation, but also that interpreter. And that interpreter is critically important to explain to others why she says this, why she says that and to explain situations for her so she has a better understanding of what is happening cause she is off she doesn't understand... Another mother tells of the need for advocacy or "hand holding", as she calls it: So lack of recognition of a lot of our kids and the supports that they need, the handholding that they need a lot of the times to be able to work themselves through the systems that we have. It's a big hindrance... Well, it's the simple fact that we're working with young adults, and you are not supposed to hold hands anymore. Yeah, and systems have a hard time sharing information a lot of times, or hearing a parent's point of view because this young person is now an adult... It's worse within the legal system, within the criminal legal system... with the RCMP. "Those guys are adults and need to be treated like adults", and they're not (adults). Respite and Safety Issues Care providers talked about the need for respite in order to maintain their relationships with the adults with FASD in their lives, as burnout was a significant factor and a common experience of the caregivers, due to the huge commitment to continue to support these adults. Another difficult issue they described is the worry about the future independence of the adults with FASD, which may not be attainable. They agree that interdependence may be a more realistic lifetime achievement. Care providers say they want a safe environment for their adult Gifts, Talents and Challenges - Adults with FASD 100 children and a place where they can achieve this measure of independence, where safety is not compromised given that these individuals can be trusting and unwary of danger: Before that, she'd meet somebody walking down the street in the morning and they'd ask for her phone number and she would give it to them and then be at her place having coffee - like a 40-year-old man - having coffee with him alone at his place and she just met him. The need for a safe place to live and socialize is also pointed out by this care provider: I think we need to have housing. We need to have some kind of housing, homes for people with FASD where they can live and get support 24 hours a day but they still have choices so it's not as if somebody is there or looking over the shoulder the whole time that they can come in and speak to someone when they need the help... That each person would have their own unit, but there would be one unit for the caregiver. And then you could get together and plan meals or whatever but just somebody available. And I think it would save the government so much money in the long run. One of the mothers talked of her son's need to feel safe and independent, while still being connected to others: He really is anxious about feeling safe and about being on his own yet he needs to know people are around... another family that I know their son has FAS and I looked after him when he was a baby and... they are saying how he is always in your face, he needs to know where you are when you are with him and I mean that is just so classic. They want someone around all the time. They want to know that they are not on their own but they want to be alone at times but not fully alone. With that, ongoing living it's always a challenge so now he thinks we should just put a suite in the basement and he can live there. Despite the many challenges and problems associated with having FASD, there is a common theme of hope and admiration expressed by the care providers about the adults with FASD in their lives. They encourage others to see the Gifts, Talents and Challenges - Adults with FASD 101 admirable qualities and abilities of these individuals. They see the barriers and hindrances of having this disability, but chose to stay involved because of their commitment and high regard for the adults with FASD in their lives. Gifts and Talents of Adults with FASD The final section will highlight the gifts and talents of adults with FASD, as these individuals are unique individuals with hopes, dreams, aspirations, and areas of expertise that await recognition and development. The answers by the adults and the care providers will be grouped loosely under the following headings: people skills, the ability to survive and overcome struggles, technical abilities, public speaking abilities, and a superior ability with language in some of the adults. Each of these categories will be addressed separately. Views of Adults with FASD The following positive qualities are a compilation of the results of the interviews. Each individual is unique, and so the combination of qualities are different for each person, with some being shared by many of the adults, but others belonging to only one or two of the participants. The adults with FASD articulated feelings of pride in themselves for possessing and demonstrating these qualities in their lives. People Skills People skills refer to participants' ability to work with others, to please others and to be connected with them. Some of the adults with FASD shone in terms of wanting and appreciating relationships, in teamwork capabilities, Gifts, Talents and Challenges - Adults with FASD 102 coupled with a keen interest in people. These participants expressed a desire to work with others and also demonstrated the ability to care about their loved ones: I also like to watch movies and I like to, also when I meet new people, I like to kind of... I'm more of a deep thinker, and I like to kind of, maybe figure out about people. Why they do the things they do, or what kind of background they have. I am very interested in human psychology type stuff. Another participant put it this way: I really like people. I have a real passion for helping people. I connect well with people, I can relate and empathize with people on a level not everybody can. I seem to know intuitively what people are thinking or feeling when other people mistake what is going on, I can sort of see what's going on behind the behavior, a lot easier than a lot of other people.... I connect well with people. And can relate to them and people are comfortable and feel safe with me. And I can diffuse violent situations or where anger is, or really, or fear is causing behavior problems. I can usually speak to what is going on in the person's head, behind the behavior and diffuse things. Yet another adult says: I liked being around people and interacting with people. I liked doing the cashier (job). Ability to Survive The ability to survive despite very difficult challenges and odds is another personality trait that is expressed frequently. Most of the adults in this study have been raised in adoptive or foster parenting situations and have been through experiences of neglect or abuse before being taken permanently into care. One adult with FASD was neglected by her adoptive family until she was taken into care for the second time as a teenager. Later, she began to live with a care provider who provided a home and support for herself and her young son. Gifts, Talents and Challenges - Adults with FASD 103 The lack of knowledge about the presence of FASD in these individuals by service providers compounded their problems further. Most of these individuals did not receive a diagnosis until they were in their mid-teens. One adult has never had a formal diagnosis, but through her studies on this topic, has selfidentified based on her parents' drinking history and resultant problems experienced throughout her lifetime. Most of the participants suffered within a school system that did not recognize FASD as a disability and as a result, did not provide extra teacher aide time. Early childhood experiences tend to compound other difficulties such as leaving school early, troubles with the law, addictions to alcohol and drugs, and other mental health issues. These are the confounding factors that make adult diagnosis of FASD virtually impossible. All but one of these adults finally settled in a loving home which provided a high degree of support, a diagnosis, education about their disability, and loving relationships with their families, something that seems to be fairly unusual with this population. One adult described her strategy for survival, which involved learning to shut down emotionally and by disconnecting with her unmet needs for basic survival. Through living in a loving home, she eventually learned to trust those around her, which allowed her to integrate her feelings into her everyday life instead of attempting to cope with alcohol and drugs. She had learned how to survive as a very young child through shutting off part of herself whenever she felt overwhelmed: Gifts, Talents and Challenges - Adults with FASD 104 I think that that experience... that's also where I started to gain my inner strength. That's when I started to say, "You know, I don't have to be afraid any more", and that's when I stopped being afraid. This ability to survive was mentioned frequently by the care providers and will be described in a later section more thoroughly. Technical Abilities Technical skills are shared by some of the adults with FASD in this study and include an ability with computers and to help others learn how to use them, as well. The following quote tells of an individual who has a gift for remembering numbers and songs, however, this is unusual for most adults with FASD who struggle with a working memory: I like to program them and change them around, and sort of play around with how it works. Finding stuff and programs to use and stuff like that.... I've got straight A's on every paper I have ever written for English, or for College English, or for first year English in University, I got straight A's too. That stuff is easy. The thing for me, I am pretty good at memorizing songs and phone numbers, phone numbers or codes or anything like that I can remember. Public Speaking Ability The next skill found to be common with some of the adults with FASD in this study is their ability and ease when speaking in public to large audiences, particularly when speaking about their own experience of having FASD. This is an unusual phenomenon, as the particular adults in this study have been able to practice their skills through training and public speaking opportunities. One participant mentioned the ease she felt about speaking in public: My first presentation with FASD was to almost 700 people and she (my mom) wanted to know if I was nervous, and I said, "No, mom." And then I Gifts, Talents and Challenges - Adults with FASD 105 went to my mom, "You're probably more nervous than me, mom," and the answer was, "Yeah." Another adult talks about the message she likes to convey to other adults with FASD: I like to talk about my life... If they really want to get somewhere, they really have to try hard and not give up. If people try hard, they can do it. It takes a little more time for me - they can do the same... It's not a shame at all; having FASD is not such a big deal. It doesn't have to control you at all. Views of Care Providers This topic can be best introduced by the following quote from one of the care providers, which describes how to find the gifts and talents of adults with FASD and how to capitalize on their strengths. She also advocates for a strengths-based perspective when working with someone with this disability, as well as being realistic about their abilities and capabilities: I'm a little hesitant to talk about special gifts because often you think that when you say "something special", it has to be somebody that has, just all of a sudden, starting playing piano or just draw like they can sell their work. Every person has a strength and that's what we looked for in the class... was whatever the interest or the strength was... and perhaps they could do art but it wasn't something that was going to be so outstanding, that was normal but for them... it was their strength so we worked on that.... I think sometimes people get the idea it's going to be something that stands out for every person. It's not that, you kind of have to look for it, foster it and then, you know, build on that... However, I think there's still a lot of room there for improvement in building on strengths, which is what you are saying. They get that school certificate but it really hasn't given them anything to work with at the end of it and so then they get out and because they equate the Dogwood with work you know, because that's what they hear, is if you have your Dogwood, you can do this. You have your Dogwood in order to sweep the floor at the mill, you have to have grade 12, but so then a lot of them start thinking, well, if I only had my Dogwood, I could get a job. And so it's heartbreaking because there's no possibility that they are going to get their Dogwood and it's really hard to tell them that, that they, well you are not going to say a lie. You have to Gifts, Talents and Challenges - Adults with FASD 106 say it in different ways or try to encourage them in different ways... so it causes a lot of problems, so if they could have had the experience of having their strengths built on, it certainly would be more beneficial because more realistic kinds of things would be happening at the end of it. To this end, the care providers were much more insightful and forthcoming about the fine and admirable qualities of the adults with FASD in their lives, than were the adults, themselves. People Skills - Care Providers Two mothers said that their sons were exceptional with soothing animals, and working with small children. Many of the mothers described the unselfish natures of their children and their ability to work with others: The kindness, the respect, the love, the joy that my kids (who are all adults with FASD) have for each other when they see each other accomplish something, there's not that, I want to use the word, selfish, everything isn't always... with a lot of my kids - about me, they are proud of their friends and what their friends have accomplished, as well. And what I see is that the older they get, the less self-centered they are. They are caring, strong individuals. I watch the young people that I work with... and what it means to them to have the kids that are younger than them, what a good feeling that gives them. Being able to teach the parents, being able to tell their stories all over. Sometimes they find it really hard telling their stories as part of a panel so that parents can learn from them as well. This was a common theme and many of the mothers reported that their adult children were very good at working with others: The other piece that we talked about before was the working with children and youth and being able to role model and to guide without any negativity or any judgment or any correction, but just to provide a positive path and positive guidance -- to just do it in a matter-of-fact and normal, friendly encouraging way, rather than having any put-downs or negative -- trying to make people learn from negative experiences but just guiding people into the positive way of contributing to the group and to the activities... Creating an emotional safety, yea. I watch them just talk and be open and demonstrate the strength that they have, that allows people to know that Gifts, Talents and Challenges - Adults with FASD 107 it's ok to be who they are... and this is people with and without fetal alcohol. It's kids and adults that feel so much a part of a group and a safe place to be and a safe place to be themselves to provide that. Another strength that seems to be common among some adults with FASD is the ability to form and work as a team. The following group of adults with FASD worked together to produce a video of the vacation camps they were hosting. These camps provide education to adults and families affected by FASD, along with offering an opportunity to experience getting away to a lake setting to enjoy some camping. Many adults and children with FASD had previously been unable to experience this as they are often asked to leave due to challenging behaviors while in a regular camp setting. The following story illustrates this trait: The crew (adults with FASD) came in and did all of the pieces of the film work from designing the story and there wasn't anybody really to guide them with what they wanted to do... they did their own story design and as the week progressed, they did all of the work that was involved with the film from designing the storyline to designing the interviews, doing the interviews, asking the questions, doing the camerawork, doing the microphone work, doing the lighting work, learning all of that stuff, all hands on learning. Really good at the hands on learning... and throughout it the leaders of the film school kept saying they'd never seen a group that was so much without ego, but that worked so well with each other, that had such a high work ethic. That it was tiring work and people with fetal alcohol were getting tired faster than maybe other people would, but they would say, "I've got to go for a rest." They'd go for a rest. As soon as it was over, they'd be right back and while they were gone, somebody else would step in and do that work. And it enlightened the film school leaders, as well as, contributing to the success of the whole project...That sense of belonging and supporting each other and being able to guide each other without being bossy and I was talking about the interdependence and what a good team these guys make because what one person doesn't have, the next person will have. The information, if there is a question and somebody has one part of the answer. Somebody else has another part of the answer and they put it together without worrying about that -- nobody has to do it all themselves... Gifts, Talents and Challenges - Adults with FASD 108 The same mother talks about her son's ability to accept others unconditionally, which was another common ability that was expressed by care providers in the study: The ability to form a trusting relationship with people... like just be completely open and never give up on that person and forgive all kinds of things. One of my guys was saying like, "I really missed somebody", and then I said, "Well, you don't miss this particular part of that". "Oh, that's just them. That's just who they are. That's OK. I can deal with that. I still love them even though it's...." One mother described the ability of her son with FASD to be able see where another's actions and decisions might be leading them, and to make a different choices for himself. Her son has been clean and sober for some time and part of his learning has been to avoid people and places harmful to his well being: ... one of his strengths, in fact, his strengths were that if people were going down the wrong path and he knew he couldn't do that, he would back up from them and not connect with them. If anybody got into drugs, they were like... gone. He just knew he couldn't go there, so he would just distance himself from them. A different mother tells of that same quality she has observed in her children along with the ability to confront others about their choices: Just an example of the kind of easy and non-judgmental and positive encouragement kind of communication, one of the guys asked me how he was doing compared to previously on a scale of 1 to 10 and my answer was 25 because the improvement was 180 degrees from what it had been and so that became a kind of shorthand for people to gently and in a humorous way, identify behavior that started to go off the tracks and so if somebody was starting to tell an off color joke, somebody would say, "Well, that's going to take you down to a 22", and there's no sting in it. There' s no punishment. There's no rejection in that. It's just a really clear in groups that understand it, really clear guidance to say, "That's a little off track, come back, let's go this way", and it's been a lot of fun just to watch that teasing going on and to watch that people don't go off track. They don't finish the off color joke. They don't complete the action that would Gifts, Talents and Challenges - Adults with FASD 109 have not been totally acceptable because they have that immediate support and guidance from each other. Ability to Survive - Care Providers The care providers had much to say about the traumatic history of almost all of the adults with FASD. The ability to survive is described in this way: I think one of the greatest ones is everyday being a new day. I watch my kids struggle sometimes with a lot of things in life but get up everyday and start all over again... Nora is studying her buns off right now, and I don't know how she will do on her provincial exam, because writing exams isn't a strong point for her. If she doesn't do it this time, she'll do it next time, and knowing her; she'll just keep at it until she gets it done. Another care provider talks of the struggles her daughter had when she was adopted as a two year old, having been taken into care permanently after the second fire in the natural parents' home: But her survival skills... All I can figure out, FAS aside, (her survival skills) must have been so strong that she must have felt that she had to be responsible 100% for herself and no crying - nothing would get her anything so why bother anyway? It just blew me away. . The same trait was demonstrated by another adult with a similar history: He was amazing, I think because he had to be the parent a lot when he was a kid. He was like the gatekeeper. He would stand at the door any time you went anywhere and question me to make sure that I had everything that I needed, from diapers to car keys to you name it. He was very protective of (his brother), (his sister) had been apprehended at three months and I don't know that she really went home much after that. He wasn't so protective and attached to her, but he was to (his brother). He had amazing survival skills, at that age. He could fabricate any story that needed to be told that would keep him safe or to keep him out of trouble. He had a real need and a real want to be a part of a family, just to be a part of, when he first came, he'd look at the pigs and said that he wanted that to be his job. He wanted to feed those pigs and I told him that that was going to be a really big job and that he was going to hate them by the end of the fall. First, I told him that they were going to go in the freezer in the fall. And that they weren't pets and he looked at me with great big Gifts, Talents and Challenges - Adults with FASD 110 eyes and said, "Won't their feet stick out?"... I guess one of his strengths, going back to the first question, is that he is still alive today. Technical Abilities - Care Providers As stated earlier, an ability to work with computers is a common skill described by the participants, along with the ability to teach others how to do so. Care providers also identified this skill: She is very good at the computer. She can get in there. She really likes the computer. You may have told them already she was in a program over at the reserve here called *** (name of the program). One of the aspects of the program was a joint venture between the *** foundation and the local reserve, I guess, but it was to teach the elders how to use electronic devices, how to access the internet and how to send emails and so rudimentary but at the same time people you can't reach easily because ... all the alcoholics who have suffered sometime and they are older and she had a ball doing this program all summer. She's really enjoyed it. Public Speaking Ability - Care Providers Public speaking ability was another prominent skill mentioned by the care providers. One mother says this about her daughter's abilities: Nancy has become very good at it. She has a dynamite presentation about things, she will say thing like "school has too many words", "meetings have too many words I don't understand. It's like living in Japan and I don't understand Japanese", and when she says it like that, the audience "gets it." Another instance of this same talent: She is a strong advocate for disability too.... To do this, to overcome her fear of speaking in public to do this because she has always been so angry at having FAS because its one of the cruelest things, I think, if you have a disability or a mental disability and yet be intelligent enough to know that you're different from other people but not intelligent enough to do anything about it. Gifts, Talents and Challenges - Adults with FASD 111 One mother believes that her son's public speaking has been very helpful to him in terms of his personal growth: He's learning from his own experience... He's being able to really revisit that and think about that a lot now and his speaking (public education) is really helping him do that. A final word on this topic: The same group present often at workshops and teach caregivers and professionals about what it's like to live with fetal alcohol and watching them support each other as they speak and help each other out and know when one person needs to be able to stop and another person can take over and keep talking and when one person needs some emotional support and when to just be quiet and let the other person talk and their ability to be honest and open and share the pieces of their lives that are really painful and the pieces that are really successful, is an incredible gift to their audience to give them that insight. Any other person... but to just give them an incredible insight into what it's like to live inside somebody else's skin and what they can offer, what they can contribute, what they need. Superior Ability with Language and Challenges to Communication Although some adults with FASD appear to have excellent abilities to communicate (as is described by one mother below), it can mask the fact that most adults with FASD have enormous communication disorders, which necessitates a trained Speech / Language Pathologist be a part of diagnostic teams. Language skills are highly developed in some adults with FASD, but can be deceptive. Another mother describes her daughter's speaking ability: She picks up languages very well and her language skills are excellent. Her use of vocabulary and the way she describes things is really good. She really gets the picture right. She doesn't beat around the bush. Gifts, Talents and Challenges - Adults with FASD 112 Perseverance A personal quality that was mentioned often is their perseverance in overcoming difficulties: ... The fact that they are able to get up every day and attempt to manage in the world that we have - so that would be then a great strength. Another care provider describes her view of the same phenomenon: I guess that resilience to.... that they are able to overcome things that I'm sure I couldn't do. You know, I think I wouldn't get up out of bed in the morning sometimes when I think about what some of them go through in a day or what they have gone through, you know that kind of strength that just they have to have to keep on going. A mother further describes this attribute: ...when other people would not have the patience or the perseverance, either one to do it. And just that -- getting up in the morning and trying again, like every day is a new day and they just keep going... sticking to it. Finishing school or keeping on like with the idea of getting a university degree of some sort -- like one of my extended family members got his degree at 35. It wasn't that he wasn't going to school in all those years; he was also working but just keeping at it -- with the idea that he would eventually get it. Volunteerism Another admirable quality described by one mother is the ability to help others through volunteering. The following adult with FASD has been a volunteer at a seniors activity center and is well loved at her job there: ... she'll do things like help with happy hour on Friday and she'll take the seniors their wine, which probably is illegal, she isn't supposed to but they just love her. She dances with the seniors at happy hour. She basically has a lot of fun and they really like her, she's chatty, she's talkative. She'll take them to the hairdresser on hairdressing day, walking with them.... She's right in there, but again, she helps the recreation coordinator, so they do (go on) out trips, like last week they went on a houseboat ride. Other times, they've done bus tours of orchards, or whatever. But she is Gifts, Talents and Challenges - Adults with FASD 113 there and very, very good again. She is helping people that are very positive anyways, being recreations coordinators and it works. The young woman also loves her job and would like to be able take some sort of formal training in this area, which would allow her to receive recompense for her labors. Presently, she believes that the training at the local college would be too challenging for her, as the course is set up for those students without her disability. Ability to "Catch-Up" This ability to grow and change - "to catch - up"- is described by one care provider: ...people (with FASD) are not the same. They are very, very different and people can learn. I know that it's a life long thing with FAS but I've seen growth in Joan. Its not quick growth but I've seen a lot of growth. She's really matured since I met her. Another mother talks about her daughter who has recently become pregnant: Faith (who is nineteen) has just grown amazingly in the last few months time, with her pregnancy and I see that connection already with that baby... she's started to really recognize where she has difficulties and where she needs help. A care provider also describes this tendency: ... as people, kind of, start to grow out of that turbulent part, maybe from about fifteen, I'm thinking of our street- affected, street-involved youth particularly, if they can kind of just make it till about twenty three, you see a real shift in terms of ability, increased ability to achieve what they see as their life goals. The ability to "catch-up" by adults with FASD debunks a myth that one of the mom's pointed out hearing at a recent local conference on FASD: In March here, there was a couple of statements made. One was that expectations increase with age but abilities don't with people who have Gifts, Talents and Challenges - Adults with FASD 114 fetal alcohol. That's a huge misunderstanding and misstatement and that came from a program that should know better. This point is further demonstrated through the following observation made by a mother regarding her son's ability to learn relevant skills on the job, which he has been unable to learn or put to use at home - the ability is to multi-task: I find that amazing, multi-tasking is not something that Tom ever has done well, and yet, because it's part of his job, it's a little part sometimes of him that I don't understand, but it's a part of his job description, so he multitasks now. He drives the vans to deliver food, and picks it up after it's done. He does grocery shopping in the middle of it and will stop and do a sink full of dishes and then run and do a deposit at the bank, and come back and drive the vans over to the shop and get the oil changed. And he can't be more than 2 kilometers past what that sticker says to get your oil changed all the time, and he does it all. It's amazing to watch him do it because it's something, that it's not... something that was always difficult for him to do was to multi-task or to see jobs that needed to be done. That is a skill that he has had to learn. He has learned it well, not at home, he does it very well at his job, but it quite hasn't fit into home yet, although it is getting better. Physical Abilities and Skills with Hands The next broad category includes mechanical, technical, or practical living skills. Many of these adults are gifted in their physical abilities such as skiing or recreational bowling, or in skills such as haircutting, pottery making, and cooking. Another parent states her son is good at cutting and wrapping meat, building things, landscaping, and gardening. She describes her son: He is getting tired of doing the manual labor, but one of the gifts is that he truly does enjoy that kind of work and he plugs along all the way through it... He likes carpentry, working with his hands; all my kids (all adults with FASD) are good at working with their hands. I remember I took them along when we were building a greenhouse because "you do it once and you do it right", he (the son who is good at carpentry) is a tad bit anal about it. Gifts, Talents and Challenges - Adults with FASD 115 The following humorous story demonstrates that adults with FASD can be gifted with a mechanical ability: ... and one of the teachers had helped the student to get money together in order to buy a barbeque for her partner, for Father's Day so they had put a little bit of her cheque every month away until they could get this barbeque and they had researched and figured out the best buy and everything. They finally got the barbeque and they brought it into the classroom. It was in a box and they opened the box and nobody knew what to do with this barbeque. It had all these instructions and it was like Chinese and everybody said, "Oh, what are we going to do with this barbeque? Oh, my," and everybody looked at the barbeque and they finally figured, "Oh, there is one guy on the staff who is pretty mechanical. So we'll get so and so to put the barbeque together", and the instructor came back one day and here's the barbeque sitting there and she said... "Well, who put it together?" "Oh, (one of the students) put it together", and (the student) couldn't read... like he just had this kind of a thing, so he had that strength. Creative Talents The next category of skills can be loosely grouped under the heading of personal creative talents, which include: an exceptional reading ability in some adults with FASD, musical ability in which some adults with FASD are able to play music by ear, without ever having had a lesson on an instrument. One care provider states: She had difficulty reading, so reading music would have been very difficult but as soon as she'd hear something by ear she would get it. So it was quite a talent, and then as she got older, she was playing other instruments by ear, so whether it was the organ or whether it was recorder that you play at school, a fife, my brother sent her a fife one year for Christmas. The first thing she played on it was "Yankee Doodle". Two adults with FASD write their own poetry, while another has been an exceptional horseback rider since a young age. Another adult with FASD is Gifts, Talents and Challenges - Adults with FASD 116 described as being very gifted with animals. Two different mothers have this to say about their individual children: You know how we got one of our daughter's power back was we put her on horses which was for love. Being on a big animal, which she has been an absolutely gorgeous rider now -- working the horses but it got her power back and that was through the treatment. Just getting this little girl, she wasn't very big, up on horses with those great big animals and being able to manage them and she had such a ... she's magic with horses. The ability to sooth animals is another one (strength) that is not common to all of the guys I'm close to, but for a couple of them it is really marked... that caring and the way a scared animal will relax and trust them is noticeable. And kids like the same people, good with little kids....the connection to the wild, to the earth, to the environment; one in particular is great observation skills, yeah... "Look at the baby geese their feet are turning color now. That's a male, that's a female, without any apparent way to learn that without a television or a like" ~ I don't know how he learns this stuff. Story telling is another common ability among the adults I interviewed. One care provider describes this: You know you have the art and the music and some can really tell a good story and some write very good poetry. I've had one student in particular who wrote really good poetry and tells an excellent story. She is just so articulate which she fools people because then they think that she has skills beyond her capabilities, but she is amazing in how at times, and at other times she can't hardly put two... she gets stressed out or if something happens, she can hardly put two words together and she actually has to leave the room, so it's not as if, and again, people misunderstand. Other Admirable Personal Qualities Other qualities mentioned in the interviews are a wonderful sense of humor; the ability to be with others and hear what is said without their own judgments interfering with the process; the ability to bond with others, particularly their families; the ability to work with children and adults as helpers; wanting to Gifts, Talents and Challenges - Adults with FASD 117 please others, which was mentioned by a number of care providers; and unconditional acceptance and support of others. Some of these adults with FASD were described as having a strong moral conscience, as well as being intelligent. One care provider describes her daughter as being "absolutely loveable" despite the many problems they continue to work through. Other gifts and talents described by the care providers include one adult's ability to imitate people and animals, to call eagles, and talk to raccoons. The care providers described a respect for authority, the ability to ask for help after learning what it is (s)he needs, being very artistic with painting and the ability to sing beautifully. Another adult has an amazing ability to memorize songs and phone numbers. So, as one service provider stated, adults with FASD have unique talents and gifts that must be searched for, nurtured and developed through focusing on the positive attributes of each individual. It can be overwhelming to face the barriers and needs of adults with FASD, however, for the care and service providers in this study, the relationships they have with these individuals makes the difficulties more tolerable and their work with these individuals worthwhile. They have found the intrinsic value of building relationships with and getting to know these adults - their personalities, likes and dislikes, their hopes and dreams, which emerge through the knowledge of these special people in their lives. The care and service providers told of the traits of caring, openness, and the willingness to please that individuals with FASD seem to possess. Even though many of them have had very difficult beginnings, they are persistent in hoping for a better future and working towards it. Gifts, Talents and Challenges - Adults with FASD 118 Chapter Six - Discussion Giftedness in Adults with FASD The findings of this study highlight the gifts and talents of the adults with FASD. It is important to note that most of the adults with FASD in this study have received the consistent help and support of their families throughout most of their lives. Their positive qualities have been noticed, supported, and encouraged through the willingness of their parents and care providers to work through whatever challenges life has presented. The positive qualities of adults with FASD are shown in the values some of the participants demonstrate, such as interdependence and collectivity that maximize the talents of each person within a group. Specifically, their combined talents are greater as a group than as individual members. Other positive traits demonstrated by some adults with FASD in this study are to accept and value differences in others without judgment. Some of them appear to value people rather than things. The values of interconnectedness and interdependence, loyalty, empathy, non-judgment of others, and being unconditionally accepting of others are admirable qualities that have been ascribed to the adults with FASD in this study. However, these gifts can also make these individuals highly vulnerable to exploitation and abuse. This study also makes clear the difficulties that adults with FASD have with asking for assistance due to problems with comprehension, insight, and language, even with the help of an advocate, despite their high level Gifts, Talents and Challenges - Adults with FASD 119 of need in every area of their lives - "financial, social, moral, mental, emotional, psychological, programs, etc." (Lutke & Antrobus, 2004, p. 68). Need for Advocates All but two of the adults with FASD in this study have been in the care of their current parents since early childhood. The parents have faced and overcome the barriers and problems as best they could, along with their children. All of the adults with FASD in this study, who were adopted or fostered, are still involved with their parents, save the young woman who lives with her supportive friends along with her son. This occurrence may be unusual, given that the prevalence of FASD is higher in children who are taken into foster care, which also predicates a more difficult transition to adulthood (Astley, et.al., 2002). This research demonstrates that adults with FASD can have very troubled teenage years, which adds additional strain to their familial connections (Astley, et al., 2002; Lutke & Antrobus, 2004). Streissguth, et al., (2004) state that adverse life outcomes increase into adulthood in the absence of a stable and nurturing home. Lutke and Antrobus (2004) have this to say about the situation: Intact families of adolescents and adults with FASD are a testament to the level of strength, resiliency and commitment these parents have to one another and to their children. A sad reality is that other families are intact, in many ways, only in that they continue to live together, because they feel they have no choice. Still others simply do not survive the experience. Regardless, all know and understand pain on a level most people would find intolerable. Denial; abandonment; anger; disbelief; hostility; victimization; grief; self-blame; all are no stranger to the parent. And in the end, each one comes to the end of the road. There is no safety net (p. 69). Gifts, Talents and Challenges - Adults with FASD 120 One of the most notable findings of this study was the paucity of information contributed by the adults with FASD in their interviews. This occurrence was expected, which necessitated the inclusion of the mothers, care providers and service providers in this study to obtain a more accurate view of the complexity of the lives of adults with FASD. The adults with FASD appear to lack insight, both in identifying the context of their particular problems, and in the areas in which they shine personally. This was expected as most of the adults with FASD in this study still live with their parents and have relied on their help and support to navigate within systems. Their lack of insight might also be due to the actual brain damage that happens as a result of the FASD, as is the case with adults with dementia, or of someone who has suffered an acquired brain injury. Often it was the mothers and fathers who encountered problems with the various systems, such as the school, justice, and medical systems, with the individuals with FASD being unaware of the situation, especially as a youngster. In this study, the care providers spoke of their strikingly similar experiences within systems that neither recognized nor offered many supports for adults with this disability. This research also demonstrated the lack of understanding of FASD by the child protection system, whose mandate includes providing supports to protect children, often those with FASD (Abraham, 2005). Many adults with FASD who have come through the foster care system enter adulthood without any attachment to their family if their connections with their foster or adoptive Gifts, Talents and Challenges - Adults with FASD 121 families have broken down through the difficult teenage years (Lutke, 2004). In some ways, the child protection system has not worked for some young adults with FASD who may have been disconnected from their natural extended families, from their roots, their heritage, and their history when they are adopted or fostered, as was the case of the young adult I worked to obtain services for. As these adults with FASD "age out" of the child protection system at nineteen years, they are often set adrift without anyone to help "plan effectively for the transition from adolescence to adulthood" (Streissguth, et al., 2004, p. 11). Their unmet needs and their lack of the necessary living skills make achieving successful independence highly unlikely (Clark, 2003). The loss of financial support and case management often leads to a decline in their well being along with increased marginalization, as was described by one of the mothers whose son has been living on the streets for some time (Clark, 2003; Ragsdale, 2006; Schmidt, 2005). The end result of these children being taken into care can be that they fall through the cracks, even before they become adults within the system, which was described by one care provider whose son ended up living on the street. In most cases, the adults with FASD are without the skills to be fully independent and cannot manage to live on their own without the support the child protection system provided. When the support is discontinued, they lose any connection to a supportive adult who formerly helped them solve problems and maintain safe shelter. Even when adults with FASD are still involved with their families, the transition to adulthood is a "crisis point" (Ragsdale, 2006, p. 101). Gifts, Talents and Challenges - Adults with FASD 122 However, adults without familial supports are far more vulnerable to "poverty, homelessness, transience, social isolation, incarceration, unemployment, abuse and addictions" (Ragsdale, 2006, p. 100). Societal Denial and Invisibility of FASD There appears to be substantial denial around the issue of FASD. The natural mother may deny the possibly of FASD simply through the lack of knowledge about the effects of alcohol use on her unborn child. If she is aware, there may be guilt and shame, as well as feeling blamed by society for harming her child, which may keep her silent and unable to seek help for her child. There also appears to be a subtle blaming attitude towards the mothers of these adults, both for having produced children with FASD and then for not taking care of them without the need for outside support. In addition to this, there still exists a stigma towards someone who is disabled, which is more evident when there are no visible indicators which might explain someone's perceived difference. Another factor to consider is that society does not easily accept responsibility for its most vulnerable members. Families tend to be held responsible for their own, due to scarce resources and the many conflicting demands on these resources. As a result, the quality of life of some is in jeopardy. Instead of protecting its most vulnerable members, there are elements of society that prey upon the weaker members, such as the young people who end up addicted and on the streets, trying to survive. There is additional denial by the adults who suffer from FASD who may not be aware that they have it or may not want to acknowledge it because of Gifts, Talents and Challenges - Adults with FASD 123 stigma and prejudice within society. There is also a component of grief and loss when they realize that they have a permanent disability for which there is little understanding and societal support. One of the care providers said this about the adult with FASD in her life: ... because she has always been so angry at having FAS because its one of the cruelest things, I think... if you have a disability or a mental disability and be intelligent enough to know that you're different from other people but not intelligent enough to do anything about it. Service providers also contribute to the element of denial through their lack of fundamental knowledge of this invisible condition due to the relative "newness" of FASD and the lack of formal education or concrete experience with it. As one provider who participated in this study put it, "the penny dropped" when they actually worked with and experienced the difficulties an adult with FASD had with understanding abstract language. This same service provider finally understood how she needed to use "concrete language and how to modify expectations and learning strategies to make their interactions more successful." Additionally, service providers have little to offer clients who are able to meet their organizational requirements and even less for those whose needs appear to be overwhelming. As an equal opportunity society, the predominant philosophy is that we are all responsible for our own betterment and that we just need to work harder to overcome barriers. Additionally, the public support system is already overwhelmed by the lack of funding to provide for the pre-existing identified needs of less fortunate societal members. Gifts, Talents and Challenges - Adults with FASD 124 We, as a society, need to comprehend the price we are presently paying for the denial of FASD as a disability and the lack of resources we allocate to support these individuals and their families. Trying to apply a band aide solution to a long-term problem has resulted in the perpetuation of the generational cycle of FASD, along with a multitude of social problems and huge loss of potential for those with FASD. Broad education is needed regarding the potential for growth and improvement by adults with FASD, along with the societal value of protecting them from harm. The systemic denial of this problem and the lack of services to support these individuals, at least in part, result from a failure to recognize FASD. The difficulty obtaining a diagnosis results in the disability staying invisible at a systems level. This results in a lack of societal-level responsibility for FASD and therefore, a failure to change present policies to provide the necessary supports. Problems are seen to belong to the people who have them with an expectation that they deal with problems on their own. The resulting lack of services and supports leaves individuals to deal with their FASD as best they can, and tends to reinforce feelings of inadequacy, alienation, low self-esteem, and shame. These feelings often contribute to the development of addictions, which can produce more children who are affected by FASD. And so the generational cycle continues. The long - term goal of supporting their healthy familial connections may show that there is a reduction of this condition in future generations, along with all the ensuing negative consequences, which would greatly reduce the monetary and societal cost of this disability. Gifts, Talents and Challenges - Adults with FASD 125 Society is changing in terms of how a visible disability is seen and supported through altered expectations and the provision of services without stigma attached. Within society, there is more understanding of limitations of individuals with a visible disability and interactions are generally less critical of difference along with more tolerance of it. Again, the invisibility of FASD provides anonymity to the person who suffers with it; however, it also keeps the condition hidden, while the behaviors of the adults with FASD can be seen as inexplicable and troublesome for those who regularly interact with them. Impetus for Change In many ways, the adoptive parents in this study are the "whistle-blowers" in terms of awareness of this disability. They have not been saddled with the guilt and shame for having unknowingly caused this condition to their children, as the one natural mother disclosed in her interview. The adoptive and foster parents' expertise and experience need to be acknowledged and valued as being the true specialists in educating us about FASD. As the advocates for someone with FASD, they have the insider's view of the positive qualities and attributes of their loved ones, as well as the needs and barriers they face. One care provider observed that changes are coming in terms of society's awareness of FASD as a hidden disability and its effects on individuals who have it. Care providers and families are pushing for the necessary changes, "from the bottom" to support systems, as they are the people most aware of the issues. They have identified numerous gaps in service, which are most visible to those who are struggling to do without the help they need. Care providers experience Gifts, Talents and Challenges - Adults with FASD 126 the deficits in understanding and learning by service providers as they often are in conflict with their lack of basic knowledge about FASD (Abraham, 2005; Clark, 2003). The blaming of the parents, whether they are natural, foster, or adoptive, stigmatizes and negates their ability to advocate for their children. Care providers are on the front lines in attempting to advocate for services on behalf of their loved ones (Lutke, 2004; Lutke & Antrobus, 2004). Prejudice towards alcohol addiction and holding women more responsible for the well being of children underlies and contributes to the invisibility of FASD within populations. A study by Poole and Isaac (2001) found that the most significant barriers to the alcohol and drug system of care were "shame, fear of losing children if they identified the need for treatment, fear of prejudicial treatment on the basis of their motherhood/pregnancy status..."(p. 12). The experience of the lack of understanding about FASD by service providers was common to mothers in this study and is evidenced by another mother's experience of their assumptions of her children as "lazy, uncaring, unmotivated, irresponsible, and non-compliant individuals who just "need to get with the program, grow up, take responsibility for themselves, and get a life" (Lutke, 2004, p. 3). The absolute necessity of more relevant and practical education is evident across all professional domains. One mother said that even the "best" schools, psychologists, doctors, and psychiatrists were unable to help her child until she eventually received an accurate diagnosis. Her child's social skills and excellent vocabulary disguised her learning disability and the damage to her brain. The family was unable to determine the maternal history of their Gifts, Talents and Challenges - Adults with FASD 127 child, as this information was never disclosed to them when they adopted their daughter, which hampered the diagnosis process. One of the mothers in this study described FASD as a disability that is "invisible and inaudible" because one cannot often tell by looking or even hearing the adults with FASD. As Lutke and Antrobus (2004) state: Individuals with FASD appear to be able to think, understand, plan, organize, develop insight, remember and follow through, but appearances are very deceiving (p. 63). Unfortunately, because the disability is hidden, the service provider/ professional does not recognize or acknowledge its existence in individuals or the expertise of the care providers, nor use it to their advantage (Abraham, 2005). Often the parents' support is seen as enabling behavior, which needs to be discouraged (Lutke, 2004). Lutke states "that systems in place for adults with other disabilities would be unable, and in many cases unwilling, to serve my children's needs" (2004, p.3). Underlying prejudices and assumptions of alcohol use and abuse disguise the issue that FASD is a blameless condition and that people who suffer with this condition did not cause it and do not deserve it, nor are they defective. Women who are addicted to alcohol and unable to quit drinking when pregnant require compassion and proper treatment rather than condemnation and scorn. In addition to the changes needed to alter perceptions of this invisible disability, recognition that there is no quick fix for this problem is needed. Behavioral modification methods will not fix their permanent brain damage. However, for adults with FASD, improvements are evident with time, training, consistency, effort, repetition and above all, a supportive environment. Gifts, Talents and Challenges - Adults with FASD 128 The parents who live and work with adults with FASD are on the front lines of society in terms of championing the rights and valuing these adults. The parents provide rich insight into reasons their children become involved with addictions, criminal activity, and incarceration. As one mother commented that adults with FASD get "so beat up" by the system that it is understandable when they turn their immense anger against society. Many adults with FASD have scarce resources to survive with few vocational skills and inadequate education. Criminal activity and incarceration often prove to be their means of survival, such as it is (Burd, et al., 2004; Fast, et, al., 1999; Moore & Green, 2004). Adults with FASD who have been educated about their own disability have the "insider's view", an accurate viewpoint of what it is like to live with this disability (Schmidt, 2005). Schmidt (2005) worked with a group of adults with FASD who did a series of workshops, which had a tremendous impact on the attendees due to the students' open and honest presentations. These students helped to personalize a label and allowed the listener to see how having FASD has impacted their lives. Schmidt (2005) states that listening to these students provided an insightful and poignant learning experience for those who attended the workshops. Similarly, many of the adults with FASD in this study provide these types of educational presentations with excellent reports of participants' improved understanding. Provision of Services Government policies must change to provide financial assistance to individuals with FASD in an inclusive and non-punitive manner. Changes in Gifts, Talents and Challenges - Adults with FASD 129 financial assistance policy would acknowledge and normalize their limitations, while supporting them with dignity. Additionally, providing some form of specialized vocational training and supported employment would encourage and support their productivity in a positive way. Support services such as lifeskills and assisted living could accompany individuals into adulthood and beyond, as needed. Presently, systems of financial aide are punitive, difficult to access, and inadequate, at best (Lutke, 2004). Ragsdale (2006) found that adults with FASD are expected to fit into society and "meet the expectations of adulthood without adequate services or supports" along with the fact that "the majority of adults with FASD do not have personal support networks" (p. 101). Specialized programs in elementary and high school for individuals who are identified with FASD could support them to develop their capabilities throughout their school years. Early identification and appropriate interventions must begin as early in the life of a child with FASD as possible. Streissguth, et al., (2004) state that an early diagnosis, along with a stable supportive environment, creates the best possible future for adults with FASD. Some of the adults in this study reported that medications helped them concentrate and greatly improved the quality of their lives, which were obtained only after they were identified as having FASD. Formal recognition by the school system that FASD is a special needs category, while providing a modified curriculum with adaptations suitable to individuals with FASD, is needed. Specialized classes might provide a peer support network to improve self-esteem and provide safety for students. These Gifts, Talents and Challenges - Adults with FASD 130 classes could provide a safe refuge from the rest of the school population, although it may also serve to separate them, which could create a negative outcome in and of itself. However, this study has shown that there is a great deal of misunderstanding and cruelty suffered by individuals with FASD within the present school system, which must be addressed in some way. Additionally, a modified environment with less stimulation and distractions makes learning and concentrating much easier for students affected with FASD. A lower student teacher ratio, along with ongoing, specialized training for staff would greatly benefit these students. Programs that are strengths - based and aimed at eventual vocational training, and later, a supported work environment appropriate to their needs and capabilities would be extremely beneficial. Generally, the adults with FASD in this study encountered a school system that pushed them up through the grades and out the door without adequate preparation for the future. Most of the adults with FASD in this study were in their middle to late twenties, so their stories of their school experiences are dated. However, their experiences created a substantial amount of anger and the destruction of their self-esteem, as many students with FASD were unable to learn or cope in regular classrooms. Specialized classrooms might provide an ideal opportunity for the students to learn about FASD in a supportive environment and to gain strategies to overcome and work around their learning deficits, if possible. They might also be exposed to positive role models, rather than comparing themselves unfavorably to other students who do not have similar difficulties. Grief and loss issues around having FASD could be Gifts, Talents and Challenges - Adults with FASD 131 normalized and discussed in ways that might lessen the acting out that happened for the adults with FASD in this study. Additionally, subjects could be more focused on vocational training, with an additional emphasis on addictions prevention, lifeskills, and other practical topics rather than more abstract and less useful subjects for these students. The provision of respite for families is necessary to support them in taking care of their children in the best possible environment. Education about the disability and strategies to support their children would be greatly beneficial to maintaining the families' well being, along with optimizing the child's development. The need for specialized, culturally appropriate treatment programs modified for individuals with FASD would allow them to integrate the knowledge and skills they need to turn their lives around, while learning about their own history. Some of the adults with FASD in this research stated that reconnecting with their culture restored their identity, which has supported them in their recovery. Adults with FASD may not have had any positive exposure to education about their disability, or may even be unaware that they may have been affected by it (Schmidt, 2005). An ideal time to learn about what FASD is and how it affects their lives could be done in a treatment and recovery environment. The adults with FASD in this study discussed how this knowledge helped them to increase their self-esteem through reframing past problems in academic settings, relating to their significant others and understanding their own history. It has helped them confront and dispel negative beliefs about Gifts, Talents and Challenges - Adults with FASD 132 themselves, while giving them hope of a better life. They learned they had a hidden disability, rather than being "just stupid" or deficient in some way. All participants in this study wished for a long-term, publicly funded environment where the adults with FASD could have their basic needs met - as needed and free of stigmatization. Safe, supported housing, where adults live interdependently, with accessible help, is necessary to prevent poverty and further marginalization (Clark, 2003). Lutke (2004) describes financial services that are: "demeaning" at present; difficult to access without an advocate, which is not allowed; initial access is difficult to achieve due to the invisibility of the disability; "the process is complicated and costly"; short-sighted; subject to frequent staff changes; and lacking in "respect for marginalized and disabled people" (p.2). There is a desperate need for respite and support for the families of adults with FASD, as the parents spoke of the physical and emotional exhaustion due to the intense amount of support they are providing to their adult children on an ongoing basis (Lutke, 2004; Lutke & Antrobus, 2004). All of the adults with FASD, with one exception, would like to move into a more independent living situation. However, there are scarce resources for these adults, other than their parents (Clark, 2003; Lutke, 2004; Lutke & Antrobus, 2004; Ragsdale, 2006). As one mother states, parents need to adjust to the reality that their adult children may have many different living and employment situations over time, as well as the resulting upset, expense, and stress these incur. The provision of respite for families is necessary to support them in taking care of their children in the best Gifts, Talents and Challenges - Adults with FASD 133 possible environment. Education about the disability and strategies to support their children would be greatly beneficial to maintaining the families' well-being, along with optimizing the child's development. Parents of adults with FASD fear for the safety of their adult children, which causes them to be vigilant far beyond the age of any other non-affected adult child (Lutke, 2004). Their vigilance results in them being labeled as "overprotective" or "over-involved", which neither helps nor supports the parents, not the adults with FASD (Lutke, 2004). As a result, families often go it alone, while their circles of support become more distant and / or judge them without understanding. Lutke (2004) describes it as, "Extended family would become as 'far away as possible' family" (p. 3). Strengths -. Based Paradigm Shift There is a need for a circle of healthy people who will advocate for and empower persons with FASD by working "with" rather than "to and for" them. Support people must have practical knowledge of this disability and be willing to form relationships with adults with FASD that are respectful, positive, and realistic of their abilities and capabilities (Schmidt, 2005). As one adult with FASD said," I have a problem -1 can work through that -1 am not a problem." It encourages a people - first perspective. A strengths - based paradigm shift seeks to discern and encourage their skills and abilities, along with their goals and desires (Saleeby, 2002). Helpers collaborate with adults who have FASD in order to achieve realistic goals. However, this perspective requires extra time, energy and a willingness to learn from these adults, along with a commitment to Gifts, Talents and Challenges - Adults with FASD 134 work with them over the long-term (Saleeby, 2002). One care provider believes that this long-term approach to supporting adults with FASD is instrumental in lessening the generational aspect of this disability as young women move into motherhood. Abraham (2005) states "parents with FASD represent an invisible and underserved population" (2005, p. 101). She identifies the barriers on a systems level as "the lack of time, funding and personnel, the lack of resources and education, the service providers skills, attitudes and expectations, and the limited services" they are able to provide (2005, p. 102). The adults with FASD in this study state that their desire is to be productive and respected citizens in our society, however, they feel ignored, overlooked and stigmatized within our present system (Schmidt, 2005). To this end, they need specialized education and training that would enable them to contribute to their own financial well being, along with satisfaction and selfesteem as a productive member of society (Schmidt, 2005). The following care provider advocates for these services right from birth: ... they have missed out from birth, really, on getting the support that was essential and by the time we get people as adults, you're filling in... you're just trying to make their lives better, that's going to, in a way that you can support them for the rest of their lives but it's not actually going to change their capabilities. That's not going to happen. Whereas if you can get support from when they are young and you can be building on those strengths from that point, I see that as making major changes... Having support available because it's changing the environment rather than the person and having those supports available to give the person selfesteem. To support them when they need it so they don't have those mental health issues, don't show to the same extent and to try and keep them away and keep them busy so they are not on the streets, so they're not mixing with the people where the alcohol and drugs are available and keeping them out of jail. Give them something to do that's positive. So always looking for filling their days with something positive but we're still Gifts, Talents and Challenges - Adults with FASD 135 missing that piece that they could have had if they'd had support from when they were young. It doesn't make sense. What does make sense is to acknowledge, support, and develop the skills and abilities of adults with FASD - for their benefit as well as, for society in general. The information presented by the care providers helped to fill in the gaps and enlighten through offering their experiences along with that of the adults with FASD in their lives. The care providers lived experiences have been instrumental in forming their views of the needs and barriers of adults with FASD, along with their gifts and talents. The care providers demonstrated their tenacity and courage in the face of insurmountable odds, while expressing their admiration and commitment to adults with FASD in their lives. All of them lamented the general lack of outside resources, other than what support they were able to provide. This sad state of affairs is slowly changing through the hard work, dedication, belief in and love for the adults with FASD by parents and care providers of adults with FASD. They are committed to the betterment of the fabric of society, which benefits all. Adults with FASD face many challenges throughout their lives, which is compounded by secondary disabilities that are as a result of misunderstanding and lack of knowledge by caregivers and service providers. They are not responsible for having FASD and there is much we, as a society, can do to prevent the occurrence of secondary disabilities, which creates negative consequences, both for them and for society in general. The following Gifts, Talents and Challenges - Adults with FASD 136 recommendations, any or all of which could bring a brighter future to those who suffer with FASD and for those who love them. Gifts, Talents and Challenges - Adults with FASD 137 Chapter Seven - Recommendations Recommendation One Early recognition of FASD through universal, publicly funded diagnostic testing for any child, youth, or adult that may have been exposed to alcohol during gestation. The use of the Adaptive Functioning Score would provide a more useful determinant of the extent of needs of adults with FASD. Recommendation Two Provision of universal supports to children affected by FASD and their families as soon as possible to support maximum potential of the individual, as well as the family, on an as-needed basis. Recommendation Three Formal recognition of FASD as a disability by the school system and the provision of supports to provide training and extra help to teachers and teachers aides. Recommendation Four Provision of special classes, if appropriate, for children with hidden disabilities so they can be in a safe, protected, and nurturing environment that recognizes the need for modified learning environments and curriculum. Recommendation Five Create a climate of acceptance and support through educating students about the disability that is non-blaming and normalizes the children with FASD as "differently-abled" rather than deficient. Gifts, Talents and Challenges - Adults with FASD 138 Recommendation Six Provide positive education about FASD to the children who have been affected so they can learn how to maximize their potential throughout their school years by focusing on what they can do and are good at. Recommendation Seven Universities and colleges educate social workers, doctors, nurses, and other professionals by providing specialized training, which includes practical exposure to adults with FASD and those care providers who are the "expert" trainers within the FASD community. Recommendation Eight Government support agencies create financial and emotional supports through semi-independent living, supported employment, and the provision of services that encourages interdependence, for the lifespan, if necessary. Recommendation Nine Health authorities dedicate funding for appropriate research and treatment that is specialized for adults with FASD in terms of curriculum, length of treatment time, and cultural activities. Recommendation Ten Secondary school and college systems provide education and vocational training of adults with FAS, appropriate to their capabilities and interests. Gifts, Talents and Challenges - Adults with FASD 139 Recommendation Eleven Government support agencies provide respite to families that support individuals with FASD, along with the recognition of their expertise in knowing what they need and what works best for their families. Recommendation Twelve The community of supporters of the adults with FASD work to destigmatize and normalize the need for ongoing support of adults with FASD through public education that focuses on their positive aspects and abilities. Recommendation Thirteen Work to teach the public about the causes of FASD in children and adults, along with recognition of its prevalence within our population. Recommendation Fourteen Adults with FASD change public perception through educating the public about their potential as adults affected by this disability. Applications to Practice This preliminary research lays the groundwork for future qualitative or quantitative research and provides a glimpse into possible areas of inquiry. This research may bring greater awareness of the potential of adults with FASD, which might be helpful in creating a philosophical service delivery mind shift that highlights their strengths and abilities as a starting point. Early identification of FASD, along with the recognition of the natural talents and gifts of each student can aid in creating services that are set up specifically for students with this disability. An alternative stream of schooling in which hands-on learning is Gifts, Talents and Challenges - Adults with FASD 140 provided in an area of interest for the individual could eventually lead to appropriate vocational training, coupled with on-going life skills types of support. As adults, a system that would allow these adults to live interdependently with necessary supports would allow them to gain independence skills while accessing extra help as problems arise. This system could parallel the present system that provides the same for adults with an IQ of less than 70, using the adaptive functioning score as a more true assessment of the supports that are needed. The services of this parallel system could be offered as a matter of course (as needed) whenever an individual has been identified as fetal alcohol affected. It would begin to meet some of the necessities of life and the need for different methods of learning for those with FASD. Heightened public awareness and appreciation for this population would enhance the possibility of receiving this support. Enhanced publicly funded services that are matter of course would alleviate much of the stress and burden on the families who support adults with FASD. Limitations of Study The limitations of this study include both the relatively small sample of participants and the lack of insight due to the relatively young age of the adults with FASD in this study. Insight into one's gifts and challenges sometimes only comes with the maturity of mid-life and beyond. Another limitation to this study is that it did not include the presence of a secondary disability that contributes to low self-esteem, which may have also hindered the adult with FASD in regards to identifying their own gifts and talents. To counter-balance the possibility of this, Gifts, Talents and Challenges - Adults with FASD 141 their mothers or care providers have been included as they have a more objective view of the adult, along with a more complete story of the struggles and setbacks the adults with FASD have experienced throughout their lives. Implications for Future Research There is a need for more research to discern the link between active addiction and FASD, which may result in the need for education of adults with FASD about the extreme risk factor of indulging in alcohol or drugs given their possible pre-disposition to becoming addicted. Additionally, one of the features of FASD is a limited ability to perceive the risks and the results of their actions, which makes this population so vulnerable to addictions and other negative lifetime outcomes. There is also the need for more longitudinal studies that examine the effects of FASD on youth who are involved with the streets and incarceration as a result of their addictions. Tracking their progress would provide rich insight into the tragic events that often occur and might be directly attributed to having undiagnosed FASD. More research needs to be done about how to make addictions treatment for adults with FASD more effective, as Lutke and Antrobus (2004) state that "traditional, language-based insight counseling methods are not appropriate for those with FASD" (p. 63). Another area of research would be to compare the life course of adults who were identified early with that of individuals who did not have an early diagnosis, to track any significant differences. Yet another question to examine Gifts, Talents and Challenges - Adults with FASD 142 is what differences a specialized school environment makes in the lives of individuals with FASD. 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Canadian Journal of Public Health, 90(3), 192-195. Wolcott, H.F. (2001). Writing up qualitative research (2nd ed.). Thousand Oaks, CA: SAGE Publications, Inc. Gifts, Talents and Challenges - Adults with FASD 151 Appendix A Study participants who are "mothers" or service providers were asked the following questions: 1. What leads you to believe that the adult you have been caring for or of whom you will be speaking, may have FASD? 2. What special gifts and talents have you noticed in the adults with FASD in your life? 3. In your opinion, what types of things may be a hindrance to him / her achieving their goals? 4. What do you think would have helped the adult you cared for achieve their goals in life? Gifts, Talents and Challenges - Adults with FASD 152 Appendix B. Adult participants with FASD will be asked the following questions: 1. What causes you to believe that you may have FASD? 2. What do you believe are your strengths and gifts? 3. If you have not been able to achieve your goals in life, what has made it difficult for you? 4. What do you think could or would have helped you to achieve these goals? Gifts, Talents and Challenges -AdultswithFASD153 Appendix C. Information Sheet and Informed Consent Form for UNBC Master of Social Work Thesis Research Student Researcher's name: Katherine Harriman Address: 1308 Alward Avenue, Prince George, BC V2M 7B1 Phone No: 250 565 7389 (work) Supervisor's name: Dawn Hemingway, Assistant Professor, UNBC Social Work Program Title of project: Gifts and talents: Untapped potential of adults with Fetal Alcohol Spectrum Disorder (FASD) Type of project: Thesis PART 1: Information Sheet Purpose of research: To explore the unknown gifts and talents of adults with Fetal Alcohol Spectrum Disorder (FASD) through speaking to adults with FASD, their mothers, and service providers of these adults. It will also seek to determine the challenges these adults have faced, often as a result of the lack of support services and understanding of FASD within society as a whole. How were you chosen: Participants have been chosen through self-identification as someone who has FASD, as the mother of an adult who has FASD, or as someone who has been a service provider for an adult with FASD. What will you have to do: You have volunteered to take part in a recorded interview that will be used in a Master of Social Work research project. It is expected that interviews will be approximately 1 to 2 hours in length. Each study participant, after being provided with full information about the interview process and their involvement, will be asked to sign a consent form. If you are the mother of an adult with FASD, you will have obtained their permission to speak about them prior to giving your own consent to participate. As an adult with FASD, you will have the legal ability to represent yourself, which has been confirmed by your mother, to ensure you understand the concept of informed consent as it applies to this study. Interviews will take place at a location convenient to you or by telephone if you prefer. Interviews will be tape recorded and transcribed. A list of themes drawn from the interviews of all the study participants will be compiled. You will be provided with a copy of the draft themes for your review and comment, if you wish to provide feedback. The final report will then be compiled taking your comments into account. Who will have access to your responses: Access to the interview transcripts will be limited to myself, to my research supervisor and to a professional transcriber. Gifts, Talents and Challenges - Adults with FASD 154 Voluntary nature of your participation: Participation is voluntary and you may withdraw at any time, without providing a reason. Any information collected up to that point will be returned to you, if you chose to withdraw. Remuneration: There will be no remuneration for your participation. How anonymity and confidentiality are addressed: Participants names will appear only on signed consent forms. Each interviewee will be identified by a participant number on both the interview audiotape and transcript. Signed consent forms will be stored separately from the tapes and transcripts. Information obtained from all interviews will be compiled as a composite of themes and findings with no names or individual identifying information included. How information is stored and for how long: The tapes and transcripts will be kept in a locked file in my faculty supervisor's office and will be destroyed within 2 years of the data collection. Name and phone number of person to contact in case questions arise or for further information: Katherine Harriman, Master of Social Work student - 250 565 7389 or Dawn Hemingway, Assistant Professor UNBC Social Work Program and Thesis Supervisor -- 250 960 5694. How to get a copy of research results: The researcher will provide you with a copy of the results at your request. Requests can be made by calling the number provided above, or emailing your request to: dreamswork@telus.net. Risks and Benefits: There is no known risk from participating in this research. The benefits of this research would be to provide information about the specific gifts and talents of adults with FASD. It is hoped that this information will be used in future research and service planning to raise public awareness of this issue, and, as a result, to improve the quality of life of individuals with FASD. Should any topic discussed in this interview cause anxiety or upset, please call Mental Health Services 1 800 661 2121 or your local Crisis Support Line. Any concerns or complaints you might have about this project should be directed to the UNBC Office of Research, 960-5820 or UNBC Research Ethics Board at reb@unbc.ca A copy of this information sheet and signed consent form will be provided to each participant. Entering your name below indicates that you understand the above conditions of participation in this study and that you have had the opportunity to have all your questions answered by the researcher. Name of Participant Signature Date Gifts, Talents and Challenges - Adults with FASD 155 PART 2: Informed Consent Form 1. I have read the attached information sheet. Yes No 2. I understand the benefits and risks involved in participation in this study. Yes No 3. I understand that by agreeing to participate I am agreeing to take part in a one-on-one interview with the researcher. Yes No 4. I understand that my participation in this study is completely voluntary. If I agree to participate in the study, I understand that I can withdraw at any time. Yes No 5. I understand that participation in the one-on-one interview will mean that my information will be tape-recorded. Yes No 6. I have had confidentiality and anonymity explained to me and I understand what these terms mean in relation to this study. Yes No 7. I understand that Katherine Harriman (Master of Social Work student), Dawn Hemingway (Thesis supervisor) and a professional transcriber will have access to the information I provide. Yes No 8. As the mother of an adult with FASD, I have obtained my adult child's permission to speak about him/her in this interview. Yes No Not applicable 9. As an adult with FASD, I am legally competent to represent myself and understand informed consent as it pertains to this research study. Yes No This study was explained to me by I agree to participate in this study as explained above.