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Adults' experiences of receiving a diagnosis of a learning disability Kelm, Joanna Lynne 2016

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    Adults’ Experiences of Receiving a Diagnosis of a Learning Disability by Joanna Lynne Kelm B.A., The University of Victoria, 2007 M.A., The University of British Columbia, 2011  A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF   DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (School Psychology)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) August 2016 © Joanna Lynne Kelm, 2016 ii  Abstract A learning disability (LD) is a term used to refer to a heterogeneous group of disabilities characterized by difficulty acquiring or demonstrating one or more academic skills, such as reading, writing, and mathematics (Fletcher, 2012).  Learning disabilities are often identified in childhood or adolescence, but persist over the lifespan (Gerber, 2012).  There is a small, but growing body of literature that has examined the experiences and outcomes of adults with LDs (e.g., Gerber, 2012; Nalavany, Carawan, & Sauber, 2013; Wilson, Armstrong, Furrie, & Walcot, 2009).  This literature has neglected to differentiate between individuals who were diagnosed with LD in childhood, and those who were diagnosed in adulthood.  Limited research suggests that an increasing number of individuals are seeking and receiving an assessment and initial diagnoses of LDs in adulthood (Sparks & Lovett, 2009).   There is little understanding of how adults make sense of the experience of seeking and receiving a psychoeducational assessment and receiving a diagnosis of an LD.  This study employed a qualitative research approach, interpretative phenomenological analysis (IPA), to understand the meaning of seeking and receiving a psychoeducational assessment and of receiving a diagnosis of an LD in adulthood.  Six adults who had received a diagnosis of an LD engaged in semi-structured interviews.  With regard to the experience of seeking and receiving a psychoeducational assessment, four broad themes and five subthemes were identified.  The broad themes are: 1) Reviewing the past, 2) Pursuing the assessment, 3) Perceptions of the clinician, and 4) Understanding the results.  With regard to the experience of receiving a diagnosis of an LD, four broad themes and 11 subthemes were identified.  The broad themes include: 1) Gaining insight and perspective on the past, 2) Making sense, 3) Conceptualizing a new self, and 4) Reflecting on the LD and society.  Participants described experiences prior to, during, and iii  following the LD assessment and diagnosis.  The findings are considered in relation to the existing literature.  Implications for practitioners, recommendations for future research, and the strengths and limitations of the study are discussed.        iv  Preface This dissertation is the original, unpublished, independent work of the author, Joanna Kelm, under the advisement of her research supervisor, Dr. Lynn Miller.  The research study involved the use of human participants, and was reviewed and approved by The University of British Columbia’s Behavioural Research Ethics Board (BREB).  The original UBC BREB Certificate of Approval number pertaining to this study is: H11-03091. v  Table of Contents Abstract ........................................................................................................................................... ii Preface ........................................................................................................................................... iv Table of Contents ............................................................................................................................ v List of Tables .................................................................................................................................. x Acknowledgments ......................................................................................................................... xi Dedication ..................................................................................................................................... xii CHAPTER I: Introduction .............................................................................................................. 1 Statement of the Problem ............................................................................................................ 1 The psychoeducational assessment. ........................................................................................ 1 The LD diagnosis. ................................................................................................................... 2 Purpose ........................................................................................................................................ 3 Research Questions ..................................................................................................................... 4 Key Terms ................................................................................................................................... 4 CHAPTER II: Review of the Literature ......................................................................................... 6 Characteristics of Learning Disabilities ...................................................................................... 6 Learning Disabilities in Adulthood ............................................................................................. 7 Outcomes and functioning for adults with LDs. ..................................................................... 8 Adults’ experiences of living with an LD. ............................................................................ 10 Improving outcomes of individuals with LD. ....................................................................... 13 Adult Learners with LD ............................................................................................................ 14 The Psychoeducational Assessment in Adulthood .................................................................... 18 Receiving an LD Diagnosis in Adulthood ................................................................................ 21 vi  Experiences Receiving an LD Diagnosis in Childhood ............................................................ 23 Experiences Receiving a Developmental Diagnosis in Adulthood ........................................... 25 Summary and the Current Study ............................................................................................... 31 CHAPTER III: Method ................................................................................................................. 33 Research Questions ................................................................................................................... 33 Interpretative Phenomenological Analysis ................................................................................ 33 Phenomenology. .................................................................................................................... 34 Hermeneutics. ........................................................................................................................ 35 Idiography.............................................................................................................................. 35 Limitations of IPA. ................................................................................................................ 36 Conducting IPA. .................................................................................................................... 37 Personal Reflection ................................................................................................................... 38 Recruitment Procedures ............................................................................................................ 39 Data Collection .......................................................................................................................... 43 Data Analysis ............................................................................................................................ 45 Ensuring Quality and Scientific Rigor ...................................................................................... 49 Ethical Considerations ............................................................................................................... 53 CHAPTER IV: Findings ............................................................................................................... 54 Research Question 1.  Seeking and Receiving a Psychoeducational Assessment .................... 56 Theme 1: Reviewing the past. ............................................................................................... 57 Feeling different/inferior. ...................................................................................................... 57 Experiencing a lack of understanding/support from others. .................................................. 60 Theme 2: Pursuing the assessment. ....................................................................................... 63 vii  Pursuing goals: The assessment as part of a journey. ........................................................... 64 Receiving messages: Outside voices. .................................................................................... 66 Theme 3: Perceptions of the clinician. .................................................................................. 71 Theme 4: Understanding the results. ..................................................................................... 72 Research Question 2.  The Meaning of the Diagnosis .............................................................. 74 Theme 1: Gaining insight and perspective on the past. ......................................................... 75 Gaining insight into a hidden self. ......................................................................................... 75 Experiencing validation. ........................................................................................................ 78 Feeling compassion for past self. .......................................................................................... 82 Theme 2: Making sense. ........................................................................................................ 84 Digging deeper: Exploring the meaning of the diagnosis. .................................................... 85 An unravelling of self:  The diagnosis and the sense of self. ................................................ 87 Questioning............................................................................................................................ 90 Theme 3: Conceptualizing a new self. .................................................................................. 92 Revised self-concept. ............................................................................................................. 93 Feeling a sense of self-efficacy. ............................................................................................ 96 Feeling a sense of choice and responsibility. ...................................................................... 101 Theme 4: Reflecting on the LD and society. ....................................................................... 103 Perceiving stigma and disclosure. ....................................................................................... 103 Questioning the system........................................................................................................ 109 Summary ................................................................................................................................. 111 Chapter V: DISCUSSION .......................................................................................................... 113 Discussion of the Findings within a Model of Educational Labeling ..................................... 114 viii  Discussion of the Findings with Reference to Existing Literature .......................................... 116 Research Question 1: Experiences of Seeking and Receiving a Psychoeducational Assessment ................................................................................................................................................. 117 Reviewing the past. ............................................................................................................. 117 Pursuing the assessment. ..................................................................................................... 118 Perceptions of the clinician. ................................................................................................ 120 Understanding the results. ................................................................................................... 121 Research Question 2.  Making Sense of the Diagnosis ........................................................... 121 Gaining insight and perspective on the past. ....................................................................... 122 Making sense. ...................................................................................................................... 123 Conceptualizing a new self. ................................................................................................. 125 Reflecting on the LD and society. ....................................................................................... 128 Implications for Psychologists, Educators, and Policy Makers .............................................. 130 Limitations and Strengths of the Current Study ...................................................................... 133 Recommendations for Future Research .................................................................................. 135 Conclusion ............................................................................................................................... 136 References ................................................................................................................................... 138 Appendix A: Recruitment Flyer ................................................................................................. 152 Appendix B: Letter of Initial Contact ......................................................................................... 153 Appendix C: Screening Questions .............................................................................................. 156 Appendix D: Consent Form ........................................................................................................ 157 Appendix E: Demographic Information ..................................................................................... 160 Appendix F: Interview Protocol ................................................................................................. 161 ix  Appendix G: List of Supportive Services ................................................................................... 163 Appendix H: Follow-up Interview Protocol ............................................................................... 164 Appendix I: Email for Member Checks ...................................................................................... 165 Appendix J: Attachment for Member Checks ............................................................................ 166    x  List of Tables Table 1: Participant Characteristics……………………………………………………………..41 Table 2: Research Question 1: Broad Themes and Subthemes……...…………………………..55 Table 3: Research Question 2: Broad Themes and Subthemes………………………………....56     xi  Acknowledgments  I wish to express my profound gratitude to my research supervisor and advisor, Dr. Lynn Miller.  Your guidance, patience, and support throughout my graduate school experience have been truly valued.  Your mentorship and encouragement have helped me to grow personally and professionally.  I would also like to offer my sincere appreciation to Dr. Bill McKee, who has supported this project since its inception.  You have offered your support throughout my graduate career, and I am grateful to have you as part of this project.  I extend my thanks to Dr. Brian O’Neill, who has graciously and generously advised me throughout this process.  I am greatly appreciative of the support you have provided me since the beginning of this project.  I would also like to thank Dr. Barbara Holmes for her support of this project.    I must also attempt to articulate my gratitude to the six adults who participated in this project, without whom, this project would not have been possible.  I have cherished and marveled at the honesty, insight, and dedication that they offered to this project and me.  I would like to thank my friends and family for their unwavering support throughout my educational journey.  In particular, I would like to thank my parents, Lynne and Trevor, whose love, encouragement, and more recently, babysitting services, have been invaluable.      xii  Dedication It is with love and gratitude that I dedicate this dissertation to my wonderful husband, Shane, and my amazing son, Harrison, who have loved and supported me in every way imaginable throughout this research project.1  CHAPTER I: Introduction Statement of the Problem Learning disabilities (LD) are a heterogeneous class of disabilities, which are characterized by a difficulty acquiring or producing academic skills, such as reading, writing, and mathematics (Fletcher, 2012; Swanson, Harris, & Graham, 2013).  Learning disabilities were once considered to be a disorder of childhood, but it is now understood that the impact of LDs persist throughout the lifespan (Fletcher, 2012; Gerber, 2012).  Research has indicated that adults with LDs are less likely to have graduated from high school and to have pursued postsecondary education, and are more likely to be unemployed or underemployed (Gerber, 2012; Holliday, Koller, & Thomas, 1999).  Furthermore, adults with LDs are more likely to suffer from comorbid mental health problems and to be socially isolated (Nalavany et al., 2013; Wilson et al., 2009).   Learning disabilities are described as a hidden disability, and may go undetected until adulthood (Fletcher, 2012).  Evidence from postsecondary education research suggests that an increasing number of adults are being assessed and initially diagnosed with LDs (Sparks & Lovett, 2009; Tze, Johnston, & Kelm, 2014).  Of the studies that have examined adults with LDs, the focus has remained primarily on individuals who were diagnosed in childhood (Gerber, 2012).  There is a scarcity of research regarding individuals who are assessed for, and diagnosed with, an LD in adulthood (Gregg, Coleman, Davis, Lindstrom, & Hartwig, 2006; Kong, 2012).   The psychoeducational assessment.  A psychoeducational assessment is required for the diagnosis of an LD in adulthood (Gyenes & Siegel, 2014).  This assessment includes an evaluation of one’s cognitive abilities, academic skills, and information-processing abilities (Goldstein, Schwebach, & Cunningham, 2011).  In Canada these assessments are most often conducted by licensed psychologists or certified school psychologists (Gyenes & Siegel, 2014).  2  School psychologists are well-suited to conduct these assessments, given their background in education, training in conducting assessments for the purposes of LD identification, and their knowledge of evidence-based interventions (Sulkowski & Joyce, 2012).  These skills are especially useful in the assessment, identification, and support of adult students, in addition to working with other professionals, such as disability service providers (Sulkowski & Joyce, 2012). School psychologists may also work in postsecondary disability service offices to support adults with LDs in addition to other disabilities (Sulkowski & Joyce, 2012).   Many adults are seeking a psychoeducational assessment in adulthood, but there is scant research examining this experience (Kong, 2012; Sparks & Lovett, 2009).  Much of the research and guidance for practitioners with regard to the assessment and diagnosis of adults with LDs remains focused on childhood (Gregg et al., 2006).  A better understanding of adults’ experiences of seeking and receiving a psychoeducational assessment may help to guide research and practice with regard to the assessment and initial diagnosis of adults with LDs.   The LD diagnosis.  Research suggests that many adults who were diagnosed with LDs in childhood do not recall being told about their diagnosis (Ingesson, 2007).  For others, being told of their diagnosis may be recalled as a confusing, a positive, or a negative experience (Holliday et al., 1999; Ingesson, 2007; McNulty, 2003).  There is evidence that individuals who accept or come to terms with their diagnosis are more likely to be successful adults (Higgins, Raskind, Goldberg, & Herman, 2002).  From this research, it has been suggested that children should to be told of their diagnosis in a clear, positive manner (McNulty, 2003).   Adults’ experiences of receiving a diagnosis that is typically identified in childhood, such as an LD, attention-deficit/hyperactivity disorder (ADHD), or autism spectrum disorder (ASD), has been indicated to be a significant emotional experience (Fleischmann & Fleischmann, 2012; 3  Kong, 2012; Orenstein, 1992; Punshon, Skirrow, & Murphy, 2009).  Because these disorders are associated with childhood or adolescence, research suggests that some adults wonder why they did not receive a diagnosis earlier (Orenstein, 1992; Young, Bramham, Gray, & Rose, 2007).  They also may examine their past difficulties in light of the new information.  They may feel some relief in realizing that there is a reason for their difficulties, but may also worry about stigma (Fleischmann & Fleischmann, 2012; Kong, 2012; Orenstein, 1992; Punshon et al., 2009).  Only two studies have examined adults’ experiences of being diagnosed with an LD (Kong, 2012; Orenstein, 1992).  As more individuals are initially assessed and diagnosed with an LD in adulthood, it is essential that research attempt to gain insight into adults’ experiences of the process.   Purpose  Research has highlighted the negative impact of LDs in adulthood, but there is a lack of research focusing on individuals who are initially assessed for, and diagnosed with, an LD in adulthood.  Understanding adults’ experiences of the psychoeducational assessment and diagnosis of an LD may allow researchers and practitioners to improve their ability to support individuals through these experiences.  The purpose of this study was to explore adults’ experiences of seeking and receiving a psychoeducational assessment, and of receiving an LD diagnosis.   This study focused on the diagnosis of an LD in adulthood for several reasons.  First, professionals such as registered psychologists, certified school psychologists, and disability service providers are likely to see an increasing number of adults who are seeking an assessment or have recently been diagnosed with an LD, given that the number of adults being initially diagnosed for an LD is increasing (Sparks & Lovett, 2009; Tze et al., 2014).  Second, LDs have 4  unique stigma and social understanding surrounding them (Gerber & Price, 2012).  Thus, the experience of receiving this diagnosis in adulthood may be different from the experience of receiving other diagnoses.  Given the lack of research with regard to this unique population, additional research is required.  The results of this study will add to our understanding of this unique population, and will provide guidance to researchers, practitioners, and educators.   A qualitative research approach, interpretative phenomenological analysis (IPA; J. A. Smith, Flowers, & Larkin, 2009), was used to explore adults’ perspectives.  This approach examines the shared and unique perspectives of individuals who have experienced the same phenomenon.  This approach provides individuals with the opportunity to give voice to and provide their interpretation of their experience, while providing the researcher with the opportunity to get close to the participants’ experiences.   Research Questions The aim of the current study was to answer the following research questions:  1. What are adults’ experiences of seeking and receiving a psychoeducational               assessment? 2. What are adults’ experiences of receiving a diagnosis of an LD in adulthood? Key Terms Psychoeducational assessment.  A psychoeducational assessment refers to a process whereby information is collected regarding an individual’s academic, cognitive, and/or psychological functioning with the purpose of identifying an individual’s strengths and weaknesses, and providing recommendations for support.  A psychoeducational assessment for the purposes of an LD diagnosis typically includes the administration of standardized measures of an individual’s cognitive abilities and academic skills.   5  Learning disabilities.  This term refers to a disorder that impacts an individual’s ability to acquire, organize, retain, or use academic skills, such as reading, writing, or mathematics (Fletcher, 2012; Learning Disabilities Association of Canada, 2015).  Learning disabilities may range in severity. Learning disabilities are lifelong, but the way in they are expressed may vary over one’s lifetime (Learning Disabilities Association of Canada, 2015).    Diagnosis.  Within the field of psychology, a diagnosis refers to the act of identifying an illness, disorder, or problem, based on the examination of symptoms.  Often criteria for a diagnosis are set out by a classification system, which provide practitioners with a common language for discussing the diagnosis, such as the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (American Psychiatric Association, 2013). 6  CHAPTER II: Review of the Literature The purpose of this chapter is to provide an overview of the available literature that is relevant to the experience of seeking and receiving a psychoeducational assessment and diagnosis of a Learning Disability (LD) in adulthood.  Although there have been several calls for research on adults with LDs over the past three decades, there remains a paucity of studies of this population (Gerber & Price, 2012).  The following review includes literature that is relevant to the experience of seeking and receiving a psychoeducational assessment in adulthood, and of making sense of a diagnosis of an LD.  This includes research relevant to the definition and the identification of LDs, as well as the functioning and outcomes of adults with LDs.  Information that may inform our understanding of the experience of receiving an LD diagnosis is included, as well as research that has examined adults’ experiences of receiving diagnoses of LDs and other disorders typically associated with identification in childhood.  The need for understanding adults’ experiences of seeking and receiving a psychoeducational assessment and a diagnosis of an LD will be discussed.   Characteristics of Learning Disabilities Learning disabilities were first described in the late 1800s in relation to reading (Anderson & Meier-Hedde, 2001), and it was at this time that Hinshelwood (1895) made a call to his colleagues to come together to produce an informed definition of what was termed “word-blindness.”  Despite more than a century of research that followed, there has yet to be agreement among researchers on a single definition and method for identifying LDs (Fletcher, 2012).  However, there are several core features of LDs upon which there is general agreement (Fletcher, 2012; Kozey & Siegel, 2008).  A defining feature of LDs is that individuals have difficulty learning or applying academic skills, such as reading, writing, and mathematics, despite effort, 7  support, and otherwise normal levels of intellectual functioning (American Psychiatric Association, 2013; Fletcher, 2012).  The most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association, 2013) states that academic skills assessed to be well below average for an individual’s age is a key criterion for the diagnosis of an LD.  Learning Disabilities present differently across individuals, and can range from relatively mild to severe, meaning that there is no single pattern of cognitive and academic performance that can be used as a template for diagnosis (Partanen & Siegel, 2014; Scanlon, 2013).  Research generally agrees that LDs are based in the brain, and are at least partially genetic (Eckert et al., 2005; Fletcher, 2012; Scerri & Schulte-Körne, 2010).  Although the DSM-5 (American Psychiatric Association, 2013) uses the term specific learning disorder, research literature tends to use the term learning disability (Scanlon, 2013), which will be the term used in this paper.  Other terms such as dyslexia (defined by the DSM-5 as LD with impairment in reading), dysgraphia (LD with impairment in writing), and dyscalculia (LD with impairment in math) are often used to describe the types of LD, and will be used throughout this literature review (American Psychiatric Association, 2013).   Learning Disabilities in Adulthood Learning disabilities were historically considered to be a disorder of childhood, which children eventually outgrew (Fletcher, 2012).  Research has refuted this assumption, demonstrating that LDs persist over the lifespan (Gerber, 2012; Morris, Schraufnagel, Chudnow, & Weinberg, 2009).  A large Canadian study, Putting a Canadian Face on Learning Disabilities (PACFOLD; Learning Disabilities Association of Canada, 2007), provides estimates of the prevalence of LDs in Canadian adults.  Their data indicate Canadian estimates of the lifetime prevalence of LDs to be between one and ten percent.  Adult populations reported low rates of 8  LDs, with rates around one percent (LDAC, 2007).  It is difficult to obtain an accurate estimate of the prevalence of LDs, particularly in adult populations, and the LDAC posit that their data are underestimates of the true prevalence of LDs in the Canadian population (LDAC, 2007).  Several factors may contribute to the underestimation of LDs.  Specifically, the PACFOLD data rely on self-report, and some individuals may not report an LD due to perceived stigma.  In addition, older adolescents and adults who were diagnosed with an LD in childhood may no longer self-identify as having an LD.  This trend was noted in the International Adult Literacy Skills Survey (IALS; OECD Statistics Canada, 1995), in which many respondents indicated that they had an LD when they were in school, but no longer believed that they were affected by it (LDAC, 2007).  This reporting bias may be the result of adults associating LDs with schooling, meaning that they no longer identify as someone with an LD once they are in the workforce (Gerber, 2012).  Finally, some adults may not have been formally identified as an individual with an LD despite struggling academically in school.   Outcomes and functioning for adults with LDs.  There is a small, but growing body of research examining adults with LDs.  The majority of this research has focused on outcomes (e.g., education, employment, mental health) of adults who initially received a diagnosis during school age years (Gerber, 2012).  There is no single pattern of cognitive and academic strengths and weaknesses that define LDs.  Rather, LDs can look quite different across individuals (Holliday et al., 1999).  Correspondingly, research has demonstrated a range of outcomes for adults with LDs, such that it is difficult to capture a general sense of the impact of LDs on adults (Gerber, 2012).  Several studies have demonstrated that many adults with LDs have successfully adapted to the demands of adult life, working at a level that capitalizes on their strengths, living independently, and actively participating in social and leisure activities (e.g., Gerber et al., 1990; 9  Newman et al., 2011).  Although some individuals may adapt well to adulthood, for many adults, LDs have a persistent, negative influence on functioning in many domains and across the lifespan (Gerber, 2012).  Adults with LDs are more likely to have poorer academic and employment outcomes than individuals without disabilities (Gerber, 2012).  These individuals are also less likely to have graduated from high school and are more likely to be unemployed or underemployed, often in a job that does not otherwise match their abilities or qualifications (Learning Disabilities Association of Canada, 2007; Wilson et al., 2009).   Research indicates that the severity of LD is related to functioning in adulthood, but that higher intelligence levels do not protect an individual from being negatively impacted by his or her LD (Gerber, 2012; Holliday et al., 1999).  Holliday and colleagues (1999) examined the outcomes of 80 adults who were identified as having an LD and high intelligence.  The researchers included adults who had an intelligence index score of 120 or higher, equal to or higher than 90 percent of the general population.  The results of this study indicated that these adults were functioning at levels consistent with their deficits, rather than their strengths.  Although all participants were classified as having intelligence that was higher than the vast majority of the population, the mean number of years of education was 12.7, and half of the participants were working in unskilled jobs.  Approximately half of the participants in this study had the desire to pursue at least a two-year degree program, but fewer than a quarter of participants had actually done so.  These results illustrate the long-term impact that an LD can have on an individual, despite the other strengths that the person may have.   Adults with LDs are more likely to suffer from comorbid mental health problems, to engage in suicidal ideation, to have poor self-esteem, and to be socially isolated (Klassen, Tze, & Hannok, 2013; Learning Disabilities Association of Canada, 2007; Nalavany et al., 2013; Shessel 10  & Reiff, 1999; Wilson et al., 2009).  A recent meta-analysis conducted by Klassen, Tze, and Hannok (2013) indicated that adults with LDs are much more likely than adults without LDs to suffer from comorbid internalizing problems (i.e., depressive and anxious symptoms).  The results also indicated that adults with LDs suffer from comorbid internalizing problems at a similar rate as children and adolescents with LDs.  Wilson and colleagues (2009) conducted a large, nationally representative study of Canadians with (n = 670) and without (n = 14,265) LDs between the ages of 15 and 44.  Their results indicated that individuals with LDs were two to five times more likely to report having suffered from general mental distress, depression, an anxiety disorder, suicidal ideation, and were more likely to have received professional consultation regarding their mental health.  In addition to poorer mental health outcomes, individuals with LDs had lower levels of social and emotional support, and were less likely to be married or in a common law relationship.   Overall, the research suggests that while some adults with LDs adjust well to the demands of adult life, many continue to struggle throughout adulthood.  Adults with LDs are less likely to work in a job that matches their strengths and qualifications, and are less successful in their educational endeavours (Gerber, 2012; Holliday et al., 1999).  Adults with LDs are also more likely to suffer from poor mental health (Klassen et al., 2013; Wilson et al., 2009). Adults’ experiences of living with an LD.  Several qualitative studies have examined adults’ experiences of living with their LD diagnosis (e.g., Goldberg, Higgins, Raskind, & Herman, 2003; Hellendoorn & Ruijssenaars, 2000; Higgins et al., 2002; Ingesson, 2007; Shessel & Reiff, 1999).  In a qualitative study by Shessel and Reiff  (1999), adults with LDs reported feeling like a fraud, and worried that they would be “found out” with regard to their LD.  Shessel and Reif (1999) described this “imposter phenomenon” as overwhelming; participants described 11  feeling anxious and insecure about others discovering their disability.  They also reported feelings of shame, embarrassment, and worthlessness.  The results also indicated that these individuals felt socially isolated, which they attributed to feeling different from others.  Goldberg et al. (2003) reported that participants in their qualitative study spoke of their LD as a significant and dominant feature that impacted them across the lifespan and in multiple contexts, such as their home and social lives, and employment.  Although the diagnosis of an LD may be associated with a number of negative perceptions, some research indicates that adults with LDs identify some positive aspects related to the diagnosis.  For instance, some adults with dyslexia report feeling more creative and having higher energy (de Beer, Engels, Heerkens, & van der Klink, 2014).  Shessel and Reif (1999) reported that some participants felt that the LD made them more resilient, and they felt that their disability helped to make them a better person.  Research has also indicated that individuals report that the stresses associated with their LD decreased over the lifespan (Goldberg et al., 2003; Ingesson, 2007).   Adults with a diagnosis of an LD report facing stigma related to the label of an LD (Denhart, 2008; Shessel & Reiff, 1999).  Postsecondary students with LD report that they feel misunderstood by other students and their instructors, believe that others think that they are not intelligent, think others feel they are “lazy”, that they do not belong in higher education, and that they are somehow cheating the system (Denhart, 2008; Shessel & Reiff, 1999).  In a qualitative study by Denhart (2008), one participant reported that his professor had assumed he was “arrogant” because he did not speak in class, when in reality his weakness in verbal communication kept him from participating.  All participants in Denhart’s study reported feeling misunderstood in some way, and worried that instructors may think that they are lazy, despite the long hours of work they would spend on assignments.   12  Research suggests that individuals with disabilities may internalize stereotypes about their disability, leading them to anticipate negative reactions from others.  This experience of anticipating stigma can prevent individuals with disabilities from disclosing their disability to others (Chaudoir & Quinn, 2010; Quinn & Chaudoir, 2009).  Research also indicates that anticipated stigma has been negatively linked to self-esteem, psychological distress and physical health (Chaudoir & Quinn, 2010; Quinn & Chaudoir, 2009).  It seems that there is good reason for adults with LDs to anticipate stigma; research suggests that LDs continue to be largely misunderstood by the general population.  Stereotypes around LDs include the belief that LDs are due to laziness or low intelligence, are not a true disability, and that people with LDs have poor social skills (May & Stone, 2010b; Roper Public Affairs & Corporate Communications, 2010).  Adults with LDs may avoid seeking support or accommodations, and may attempt to conceal their LD due to perceived stigma and anticipated discrimination (Nalavany et al., 2013; Shessel & Reiff, 1999).  In a study by the National Center for Special Education Research (Newman et al., 2011), only 24% of postsecondary students with LDs disclosed their diagnosis to their schools, and only 17% of students received accommodations.  Similarly, many adults with LDs do not disclose their diagnosis to employers, nor do they request accommodations that could improve their job performance (Gerber & Price, 2012; Gerber, Price, Mulligan, & Shessel, 2004).     It seems that adults with LDs express a variety of negative perceptions about themselves and feelings related to their diagnosis (Gerber & Price, 2012; Goldberg et al., 2003; Hellendoorn & Ruijssenaars, 2000; Higgins et al., 2002).  For some, the LD remains a central aspect of their sense of identity.  Adults with LDs report facing and anticipating stigma, which may prevent 13  them from disclosing their diagnosis and seeking support (Denhart, 2008; Gerber & Price, 2012; May & Stone, 2010a).  Improving outcomes of individuals with LD.  Given the diverse outcomes of adults with LDs, several studies have attempted to identify variables that may be related to better adult outcomes (Field, Sarver, & Shaw, 2003; Gerber, Ginsberg, & Reiff, 1992; Reiff, Gerber, & Ginsberg, 1997; Sarver, 2000).  Early identification and the remediation of academic skills are generally assumed to be related to better outcomes, whereas the severity of the LD and persistence of academic difficulties is linked to poorer outcomes (de Beer et al., 2014; Gerber, 2012; Shaywitz, Morris, & Shaywitz, 2008).  Several other factors have been linked to success for this population.  In a meta-analysis of 33 studies, de Beer and colleagues (2014) identified 318 factors hindering and facilitating factors to participation in work for adults with dyslexia.  The most frequently reported hindering factors included negative perceptions of one’s self, the difficulty acquiring and keeping a job, and the impact of reading weaknesses on one’s proficiency at work.  Support from colleagues and employers, access to assistive technologies, compensation strategies, and job satisfaction were factors that facilitated work participation (de Beer et al., 2014).   Using data from the Education Longitudinal Study, Lee and colleagues (Lee, Rojewski, Gregg, & Jeong, 2014) identified variables that predicted persistence in postsecondary education for adolescents with LDs and emotional/behavioural disorders.  These variables included grade point average, socioeconomic status, and the number of friends who planned to attend a four year college.  Adults with LDs who are deemed successful are also more likely to set appropriate goals, persevere in working towards goals, and to be proactively engaged in their political, economic, and social environment (Goldberg et al., 2003; Reiff, 2004; Shessel & Reiff, 1999).  14  They are also more likely to access social support and use effective coping strategies (Goldberg et al., 2003).  Self-determination has also been identified as a key characteristic related to several markers of success for adults with LDs (Field et al., 2003; Reiff et al., 1997).  Self-determination refers to the skills, beliefs and knowledge that allow an individual to feel capable to produce the behavior necessary to reach certain goals (Field et al., 2003).  Sarver (2000) found that the grade-point average of postsecondary students with LDs was positively related to feelings of self-determination.  A related concept, self-awareness, has also been linked to success for adults with LDs.  Specifically, Goldberg and colleagues (2003) found that adults with LDs who were able to compartmentalize their disability, seeing it as only one feature of themselves, were more successful than those who felt defined by their LD.   Overall, this research suggests that adults with LDs who are considered to be successful are more likely to have social support, access to support from one’s work, and they are more likely to set and pursue appropriate goals (Goldberg et al., 2003; Reiff, 2004; Shessel & Reiff, 1999).  Self-determination has also been indicated to be an important factor related to success for adults with LDs(Field et al., 2003; Goldberg et al., 2003).  These findings indicate that an individual who feels capable to set and reach goals, and who sees their LD as only one feature of their identity (not a defining feature), is more likely to be successful.   Adult Learners with LD Adults with LDs enroll in postsecondary education at a fraction of the rate of adults without LDs.  However, the number of individuals identified as having an LD in Canadian colleges and universities is steadily increasing (Gregg, 2007; Harrison & Holmes, 2012; Learning Disabilities Association of Canada, 2007).  Adults with LDs make up the highest group of students with documented disabilities at the postsecondary level (Gregg, 2007; Harrison & 15  Wolforth, 2007; Learning Disabilities Association of Canada, 2007).  Gregg (2007) notes that adults with LDs arrive unprepared for the challenges of postsecondary education and have poorer postsecondary outcomes than non-disabled peers.  In addition to lacking the academic skills required to succeed in college and university, Gregg notes that there is little in place to support students with the transition to postsecondary education, and many students lack the documentation needed to access academic accommodations or supports (Gregg, 2007).  In addition, although postsecondary institutions are required to provide access to support and academic accommodations to students with disabilities, these supports are often inadequate to meet the needs of these students, or are not accessed.  These factors likely contribute to the poor completion rates of adults with LDs in their postsecondary programs (Gregg, 2007).  As increasing numbers of adults with LDs enter educational establishments, there is a need for the field of adult education to support learners with LDs across the lifespan (M. C. Smith & Pourchot, 2011).  There is a growing body of research focusing on the ways in which adult learning differs from the learning that occurs in childhood and adolescence (Merriam & Bierema, 2013).  A major difference in learning in adulthood, compared to that in childhood, is that of the increasing demands on an adult’s life.  No longer is learning one’s primary responsibility, as it is in a child’s life.  Rather, the activity of learning becomes one of many competing demands in an adult’s life.  An influential theory in adult education is the theory of andragogy promoted by Knowles (1970).  Knowles defined the term andragogy as “the art and science of helping adults learn.”  Knowles argued that adults come to learning with a unique set of experiences, strengths, and needs, and these factors should be considered and integrated into the teaching of these individuals.  Based on this idea of adults approaching learning at a different developmental stage, Knowles differentiated adult learning from the learning that is done by 16  children and adolescents in schools.  Specifically, Knowles differentiated adult learning from childhood learning in the following ways: 1) adults have an independent self-concept, and are expected to direct their own learning, 2) adults hold a larger foundation of life experiences from which they can draw and learn, 3) adults’ learning needs are increasingly motivated by developmental tasks related to their roles as responsible members of society, and 4) adults’ readiness and goals for learning become focused on immediate application and centred upon particular problems.  Knowles acknowledged that this first point, expecting adults to have an independent self-concept and be able to direct their own learning, did not necessarily come naturally to some adults.  He noted that the expectation to be an independent learner could make the transition to adult learning difficult for some individuals.  He noted that for some, their memories and experiences of feeling less capable or of feeling overwhelmed in school could negatively influence their ability to be independent learners.  Knowles suggested one way to address this difficulty through a process that he called a diagnosis of needs.  This is a process in which adults gain a clear sense of their learning gaps and the discrepancy between those gaps and the competencies required to meet their learning goals (Knowles, 1970).  Knowles argued that an adult’s dissatisfaction with their learning gaps will provide the motivation needed to reach his/her educational goals.   Price and Shaw (2000) suggested that some aspects of Knowles’ theory of adult learning can be applied to support adult learners with LDs.  In particular, Price and Shaw endorsed the suggestion that adult educators can support adults with LDs by helping them to conduct a diagnosis of needs.  This recommendation is supported by some findings from self-determination research (Field et al., 2003; Reiff, 2004).  Self-determination has been linked to success for adults with LDs.  In fact, Field, Sarver, and Shaw (2003) note that, “self-determination should be 17  a central organizing concept in postsecondary programs for all adults with disabilities, including those with learning disabilities” (p. 339).  One aspect of self-determination for adults with LDs is an understanding of the nature of one’s LD, which has been indicated to be linked to higher self-esteem and successful outcomes for youth and adults (Field et al., 2003; Reiff, 2004).  Increasing adults’ awareness of their LD, with a focus on understanding their strengths and weaknesses, can help them to positively reframe their disabilities (Gerber, Reiff, & Ginsberg, 1996).  Reframing has been defined as a process by which an individual recognizes, understands, and accepts his/her LD, but does not view his/her LD as the defining characteristic of oneself (Gerber et al., 1996; Reiff, 2004, p. 187).  Having an action plan related to one’s disability is also part of reframing (Gerber et al., 1996).  Research has indicated that adults with LDs who are more successful, based on factors such as income, employment, and education level, were more likely to have positively reframed their LD (Gerber et al., 1992).  Drawing from andragogy and self-determination literature, assisting adults to develop a clear sense of their strengths and weaknesses, and creating a plan to meet one’s goals, may increase the success of adult learners with LDs.   One way to help adults to understand their strengths and weaknesses is to conduct a psychoeducational assessment.  Within the context of adult education, a psychoeducational assessment can serve three primary functions.  First, it can provide adults with an understanding of their own areas of cognitive and academic strength and weakness.  Second, the results of this assessment can provide the learner and his or her advisors with clear recommendations for meeting their learning goals.  Third, the assessment is necessary within most postsecondary educational environments for the access of formal academic accommodations (e.g., audio 18  recording lectures, additional time on exams), which can assist the adult learner in meeting their goals.   Given that an increasing number of adults with LDs are arriving at postsecondary institutions unprepared and underserved, there is a growing need to understand how to support these students (Gregg, 2007).  Based on Knowles’ (1970) model of andragogy, Price and Shaw (2000) posited that adult educators can help adults with LDs by assisting them to understand their strengths and weaknesses.   The Psychoeducational Assessment in Adulthood In addition to the lack of consensus when it comes to defining LD, there is disagreement regarding the best method for the assessment of LDs (Harrison & Holmes, 2012; Kozey & Siegel, 2008; Sparks & Lovett, 2009).  Depending on the province, a licensed psychologist or school psychologist (referred to henceforth as clinicians) is able to assess and identify an adult as having an LD in Canada (Gyenes & Siegel, 2014).  These clinicians can generally use provincial or territorial special education policies to guide the identification of school-age children and adolescents with LDs (Kozey & Siegel, 2008).  There is a lack of consistency in the guidance of clinicians with regard to the identification of LDs in adults (Gregg et al., 2006; Sparks & Lovett, 2009).  For instance, recent research has highlighted the inconsistency between postsecondary institutions within North America with regard to the documentation requirements to support an LD diagnosis for adult students (Gyenes & Siegel, 2014; Harrison, Lovett, & Gordon, 2013; Sparks & Lovett, 2009).  Regardless of the diagnostic criteria used, diagnosis of an LD in adulthood requires a psychoeducational assessment of one’s cognitive and academic functioning (Harrison & Holmes, 2012; Sparks & Lovett, 2009).   19  As psychoeducational assessments for the diagnosis of LDs have been more thoroughly examined and discussed with regard to children and adolescents, the following describes this process, followed by a description of ways in which an assessment with an adult may differ from one conducted with youth.  An assessment of a child typically begins with an interview with the child’s parent(s) and teacher(s) to gain background information, and observations of the child in several settings.  Several sessions of cognitive and academic testing are conducted with the child, and, if relevant, parents, teachers, and the child are asked to complete various questionnaires that are relevant to the referral question (Sattler, 2014).  The clinician then interprets the accumulation of assessment results, and includes the interpretation and recommendations in a written report.  Finally, the clinician may meet with the teachers and parents to share with them the results of the assessment and aid in education planning (British Columbia Association of School Psychologists, 2007; Groth-Marnat, 2009; Sattler, 2014).  Clinicians meet less often with the child to review the results of the assessment (Tharinger et al., 2008).   Although the general sequence of steps remains the same in the assessment of an adult, there is one primary difference.  In contrast to an assessment with a child, for which the parents and teachers are the primary providers and recipients of information (British Columbia Association of School Psychologists, 2007; Groth-Marnat, 2009; Price & Shaw, 2000; Sattler, 2014), the adult being assessed typically takes on the role of both the primary informant and recipient of information in his or her assessment (Groth-Marnat, 2009; Northern Ontario Assessment and Resource Centre; Regional Assessment and Resource Centre).  The clinician gathers relevant background information from the adult and explains the results of the assessment to him or her, including specific cognitive and academic strengths and weaknesses, 20  aspects of daily life that may be impacted, and resources and recommendations that may support the adult’s success (S. R. Smith, Wiggins, & Gorske, 2007). There is little research regarding the experience of seeking and receiving a psychoeducational assessment.  The bulk of this research has focused on parents’ reactions to and comprehension of the assessment results (Harvey, 2006; Merkel, 2010; Miller & Watkins, 2010; Zake & Wendt, 1991).  This research has indicated that parents report satisfaction with the assessment process itself (Fairchild & Seeley, 1996), but often find the written report and feedback session confusing (Harvey, 2006; Zake & Wendt, 1991).  Parents indicated that professional jargon and technical language made the assessment reports difficult to understand, and that the recommendations were often deemed inappropriate or vague (Harvey, 2006; Merkel, 2010).  It is conceivable that people who undergo psychoeducational testing as adults would face similar issues of confusion that parents have reported regarding understanding the results of the assessment.  Psychoeducational assessment reports are often written at a high level of reading difficulty, which is problematic given that adult clients may have lower levels of reading skills (Harvey, 1997).  A study by Zake and Wendt (1991) indicated that the socioeconomic status and language skills of parents was significantly related to their understanding of the psychological report.  Specifically, parents with lower socioeconomic status and/or language skills had more difficulty understanding their child’s assessment report.  Research has also indicated that parents with a college degree are more likely to understand the results of a report than parents with less education (Miller & Watkins, 2010).  These findings have significant implications for the adult assessment, as the client may have low level of education, reading level, or language skills.  Adults face the added responsibility of being their own advocate, following through with recommendations, and seeking accommodations and other resources for support (Denhart, 2008).   21  Two studies have provided some insight into adults’ experience of seeking and receiving a psychoeducational assessment.  In a qualitative research study by Orenstein (1992), adults reported feeling motivated to pursue an assessment in order to gain answers and understand their difficulties.  Participants also reported that some aspects of the testing sessions felt taxing and embarrassing, when they felt that their performance was poor, whereas other aspects of the testing sessions were enjoyable (Orenstein, 1992).  Another study of adults with an LD diagnosis indicated that the participants who were initially diagnosed in adulthood experienced positive anticipation when seeking the assessment, as they were eager to find out what was “wrong” (Denhart, 2008).   The limited available research on adults (Denhart, 2008; Orenstein, 1992) and parents of children (Fairchild & Seeley, 1996; Harvey, 2006; Merkel, 2010; Miller & Watkins, 2010; Zake & Wendt, 1991)  who have received a psychoeducational assessment suggests that seeking and receiving a psychoeducational assessment may be an exciting, confusing, and emotional process.  Given the increasing number of adults seeking assessments, more research is necessary to understand this experience. Receiving an LD Diagnosis in Adulthood Although LDs are often initially diagnosed in childhood and adolescence, some individuals go unidentified until adulthood (Altarac & Saroha, 2007; Nichols, 2012).  There are several reasons why an individual may not be diagnosed with an LD in childhood.  The DSM-5 (American Psychiatric Association, 2013) notes that although LDs typically manifest in childhood, the difficulties may not become evident until later in one’s life, when the demands on learning exceed the individual’s  abilities.  In other words, children and adolescents may find compensatory strategies that allow them to “get by” in elementary and secondary school, but 22  may no longer be able to compensate for personal deficits once placed in a more demanding environment, such as postsecondary education or a demanding workplace.  Other adults may not have been identified in childhood due to the invisibility of the disorder (i.e., “slipping through the cracks”).  Learning disabilities are considered a “hidden disability” in that they are not immediately apparent (Fletcher, 2012; Nalavany et al., 2013).  Typically, the path to the identification of an LD in childhood requires that an adult, such as a teacher, observes the child’s academic difficulties and seeks additional resources.  If an adult does not observe the child’s difficulties and does not refer him or her for additional assessment or support, a diagnosis cannot be made (Gresham, 2002).  Finally, definitions and criteria for LD diagnosis have been evolving since LDs were first identified (Fletcher, 2012), which has contributed to steadily increasing identification rates of LDs (Scruggs & Mastropieri, 2002).  This increase in identification rates of LDs implies that there may be individuals who would not have been identified with the disorder in their childhood or adolescence, but who would be diagnosed with the disorder under current guidelines (Learning Disabilities Association of Canada, 2007; Scruggs & Mastropieri, 2002).  There are no studies directly examining the prevalence of individuals who were initially diagnosed with an LD in adulthood, but some research related to adult postsecondary students may provide insight.  These studies have indicated that as many as 40% to 60% of adult students identified with LD had received the diagnosis after beginning postsecondary education (Nichols, 2012; Sparks & Lovett, 2009; Tze et al., 2014).  In a large study of 378 postsecondary students with LD diagnoses, Sparks and Lovett (2009) reported that 60% of their participants had received their diagnosis after entering postsecondary education.  Another study examined data from a large adult education program over the course of four years (Reynolds, Johnson, & Salzman, 2012).  This data revealed that 158 of their students received an initial LD diagnosis 23  while in this program.  Although this number is small in relation to the number of students enrolled in the program (fewer than 1% of the student population each year), it nonetheless indicates that there are a number of individuals seeking an assessment and LD diagnosis in adulthood. Learning Disabilities  are considered a “hidden disability”, and thus many individuals may go undiagnosed until later in life.  The present study attempted to gain insight into the experiences of individuals who were not diagnosed with an LD until adulthood.   Experiences Receiving an LD Diagnosis in Childhood An LD diagnosis is typically associated with childhood, and can provide children with an explanation and support for their difficulties (Higgins et al., 2002; McNulty, 2003; Partanen & Siegel, 2014).  There has been an increasing emphasis on the importance of early identification and intervention for children with LDs, following from the tenet that early support will mitigate the impact of the disorder on functioning (Partanen & Siegel, 2014).  Research suggests that receiving a diagnosis of an LD can be experienced in positive and negative ways.  Several qualitative studies have examined adolescents’ and adults’ perspectives on their experience of having received a diagnosis of an LD in childhood (Higgins et al., 2002; Ingesson, 2007; McNulty, 2003).  These studies have included interviews with adolescents and adults about their experiences of being diagnosed with an LD in childhood.  A study by Ingesson (2007) reported the findings from qualitative analyses of 75 adolescents and adults (ages 14 to 25 years) who were diagnosed with an LD in childhood, asking young adults to recall the experience of being told of their diagnosis of a reading disorder in childhood.  Almost 40% of the participants did not recall being told the diagnosis, and 25% of participants reported that although they remember being told of their diagnosis, they did not understand what it meant.  Of the remainder of the participants (who recalled being told and understanding their diagnosis), half reported that the 24  event was painful and embarrassing, whereas the other half felt relieved at being given an answer for their difficulties.  Similarly, in Holliday and colleagues’ (1999) study of 80 adults with high intelligence and LDs, only eight percent recalled being told of their high intelligence levels or talents during their school-age years.   McNulty (2003) conducted a qualitative study with 12 adults who had been diagnosed with dyslexia in early or middle childhood.  McNulty’s analyses revealed the shared experiences of the 12 participants, from prior to diagnosis through adulthood.  The participants discussed feeling different and misunderstood in childhood prior to their diagnosis.  The diagnosis was discussed in negative and positive lights.  For some participants, the diagnosis was perceived as a confirmation that something was wrong with them, whereas for others, it decreased feelings of being different.  The results indicated that participants who received a positive, clear explanation of their diagnosis were more likely to perceive their diagnosis in a positive manner.  McNulty noted that the testing and diagnosis was a significant event that seemed to set the course of the participants’ lives, either negatively or positively.  Following the diagnosis, participants continued to struggle with feeling that something was wrong with them, which negatively impacted their self-esteem.  Focusing on areas of strength, adapting and compensating for their areas of weakness, and finding a niche helped participants to increase their self-esteem and quality of life.  McNulty suggested that diagnoses should be explained to children in a positive and clear manner, with a focus on strengths.   In a longitudinal qualitative study, Higgins and colleagues (2002) investigated 41 adults’ experiences of accepting their diagnoses of LDs.  All participants had received diagnoses of LDs as children, and had been followed for 20 years.  The researchers found that those adults who were the most successful (based on factors such as employment, education, family relations, and 25  social and psychological adjustment) were more likely to have passed through different stages of what they described as “coming to terms with” the diagnosis.  These stages included: (a) awareness of the “differentness” (academic and non-academic differences); (b) the labeling event (receiving the assessment and diagnosis); (c) understanding/negotiating the label (understanding the extent and impact of the diagnosis); (d) compartmentalization (seeing the diagnosis as just one part of themselves); and (e) transformation (recognizing the positive impact of the diagnosis).   In seeking to understand the experiences of individuals who have been diagnosed with an LD in adulthood, the experiences of those who were diagnosed with an LD in childhood and adolescence may shed some light on this experience.  Although many individuals report not remembering hearing about their diagnosis, others recall the experience as a positive, neutral, or negative experience (Holliday et al., 1999; Ingesson, 2007).  For some, it may take time to process and “accept” their diagnosis (Higgins et al., 2002).  Experiences Receiving a Developmental Diagnosis in Adulthood     The LD label is one of several diagnoses that are typically associated with childhood, such as autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).  As these disorders can sometimes go undiagnosed until adulthood, some researchers have examined what it means to receive a diagnosis of this type in adulthood.  Several recent studies have examined the experience of receiving a diagnosis of ADHD in adulthood (Fleischmann & Fleischmann, 2012; Fleischmann & Miller, 2013; Young et al., 2007).  Similar to LD, ADHD is a disorder that is typically associated with childhood, but can continue to impact functioning in adulthood (American Psychiatric Association, 2013; Holliday et al., 1999; Kessler et al., 2006).  Attention-deficit/hyperactivity disorder often impacts academic performance and social 26  functioning, and ADHD and LDs often co-occur (American Psychiatric Association, 2013).  Studies indicate that many individuals do not receive an ADHD diagnosis until adulthood, and this population has gained some interest from the research community (Barkley, Murphy, & Fischer, 2008; Fleischmann & Miller, 2013).  Based on the similarities between ADHD and LD, research in this area may inform the current study.  These studies have indicated that adults who are diagnosed with ADHD report several common experiences (Fleischmann & Fleischmann, 2012; Fleischmann & Miller, 2013; Young et al., 2007).  Specifically, the participants reviewed their past and reflected upon the messages that they received from others (parents, teachers, peers) that there was something different about them.  These individuals explained that they had eventually accepted and internalized what others were telling them: there was something wrong with them.  Adults also discussed the experience of the diagnosis as an emotional event.  The participants reported that the diagnosis provided some relief, as they realized that their ADHD could account for their childhood difficulties, and they were not to blame for their difficulties.  Participants reported hope and a sense of confidence about the future.  The results of this study revealed that over time, participants began to focus on the positive aspects of themselves related to their diagnosis, such as creativity, high energy, and sense of humour.  The overall messages from Fleischmann and Miller (2013) and Fleischmann and Fleischmann’s (2012) studies were positive messages of hope and improved self-image.  Young and colleagues’ (2007) study, on the other hand, speaks of the feelings of confusion, anger, and sadness that participants discussed when they reviewed their past.  Many participants ruminated about why they had not been diagnosed earlier in their lives, and some felt that they had wasted many years of their lives when things could have been different.  Based on their results, Young and colleagues (2007) put forth a six-stage model regarding the acceptance of the diagnosis of ADHD in adulthood:  (a) relief and 27  elation, (b) confusion and emotional turmoil, (c) anger, (d) sadness and grief, (e) anxiety, and (f) accommodation and acceptance.     A study by Punshon et al. (2009) examined the experiences of 10 adults who had recently received a diagnosis of Asperger’s disorder.  Asperger’s disorder, which has been encompassed in the DSM-5 by autism spectrum disorder, is also a disorder that is typically associated with identification in childhood or adolescence (American Psychiatric Association, 2013).  A primary symptom of this disorder is the significant impairment in social interaction (American Psychiatric Association, 2013).  Participants’ responses in this study provided some results that align with the ADHD studies.  Specifically, the participants spoke of having grown up feeling that there was something wrong or different about them, and of feeling misunderstood by others.  These feelings impacted their sense of identity and mental health.  Their diagnosis of Asperger’s disorder provided them with some relief, which accounted for past and current experiences and behaviours, and relieved the participants of feelings of blame.  Participants also spoke of the societal stigma and misunderstanding of Asperger’s.  Participants also discussed the role of the diagnosis in providing access to supportive services, and the value placed on meeting others with the same diagnosis.  These authors discussed the experience of receiving the diagnosis as a process requiring time for adjustment.  These authors also spoke to the role of the diagnosis with regard to providing individuals with an explanation for their behaviour and to providing access to support (Punshon et al., 2009).   A search of the literature resulted in only two studies (Kong, 2012; Orenstein, 1992) that have specifically examined the experience of receiving a diagnosis of an LD in adulthood.  Three additional studies (Arceneaux, 2006; Denhart, 2008; Griffin & Pollak, 2009) included adults who had received diagnoses of LDs in adulthood within their samples.  Denhart’s (2008) study did 28  not separate the analyses based on time of diagnosis, but noted that all 11 participants reported feeling validated when they learned of their intellectual ability, with one participant noting, “Well, I’ve learned that I’m not stupid” (p.  491).   Griffin and Pollak (2009) conducted a thematic analysis of interviews with 27 adults with a variety of diagnoses considered to be “neurodiverse,” including learning disabilities, Asperger’s disorder, ADHD, and depression.  Fifteen of the participants had been diagnosed in late adolescence or adulthood.  The authors noted that most of these participants described frustrating and difficult experiences prior to their diagnosis.  The authors did not comment any further on differences between participants identified in childhood compared to those identified later in life.  Overall, 22% of the participants in this study discussed unhappiness related to their diagnosis, whereas nearly half of the participants discussed experiencing feelings of relief upon receiving their diagnosis.  Their findings indicated that participants viewed their diagnosis as fitting into one of two categories, either as within a medical/deficit view of neurodiversity, or as a difference view of neurodiversity.  The authors noted that those who adopted the “difference” view generally had a more positive view, and were more aware of their strengths, whereas those with a medical/deficit view were more likely to discuss their difficulties.   A doctoral dissertation examined college students’ experiences in managing stigma related to LDs.  Arcenaux (2006) was particularly focused on the participants’ ability to successfully manage stigma and present a positive self-concept.  As with Denhart’s (2008) study, Arcenaux (2006) did not specifically focus on adults who had recently received a diagnosis, but did write about the subset of five participants who were newly diagnosed with an LD.  The results indicated that those participants who were newly diagnosed described themselves as good students who had not had academic difficulties prior to their postsecondary schooling, but sought 29  the assessment due to an academic crisis in college.  Arcenaux noted that these participants indicated that the diagnosis provided some relief because it legitimized their difficulties.  Aside from this finding, Arcenaux did not report any other differences between the participants who were newly diagnosed, and those who had been diagnosed prior to adulthood.    Kong (2012) examined the experiences of six adult students who were diagnosed with dyslexia after beginning their Master’s degrees at a university in the United Kingdom.  The participants were all considered mature students (ages 28 to 43 years) and had intelligence levels in the average to superior ranges.  Using thematic analysis, Kong identified seven major themes relating to the impact of the diagnosis: 1) distress, 2) self-doubt, 3) embarrassment, 4) frustration, 5) relief, 6) confidence, 7) motivation.  All themes refer to emotions that participants expressed feeling after having received their diagnosis.  The first four themes represent participants’ negative reactions to receiving a diagnosis of an LD.  Kong noted that participants perceived their diagnosis to be a negative reflection of their intelligence, “with no one expressing a positive image of dyslexia” (p.  134).  Participants reported feeling embarrassed at being different, and frustrated by not receiving the support they needed.  Although some participants felt relief at learning that there was a reason for their difficulties, others reported that it was difficult to change their negative perception of their struggles.  In relation to the theme of confidence, Kong notes that most participants discussed the increase in confidence they felt through being provided with an understanding of their strengths and weaknesses.  The theme of confidence is also used to describe participants’ feelings of empowerment, and pride in past achievements.  Finally, participants reported feeling motivated to seek support and succeed academically.  Of note, the researcher did not provide any information regarding strategies for enhancing the rigor of the 30  study, such as discussing assumptions, researcher reflexivity, or information regarding the record-keeping strategies (Cohen & Crabtree, 2008; Mays & Pope, 2000).   In an unpublished doctoral dissertation study, Orenstein (1992) examined the experiences of 20 adults who were diagnosed with an LD in adulthood using grounded theory.  Grounded theory is a qualitative approach that attempts to develop a theory of basic social processes that occur in particular contexts (Corbin & Strauss, 2014).  Although the purpose of this study was to examine participants’ experiences of being diagnosed with an LD, the focus remained primarily on participants’ perception of having lived so many years without a diagnosis.  The core theme of this study was designated Imprisoned Intelligence, which Orenstein described as participants’ “motivation and belief in one’s capacity to learn coupled with the inability to do so” (p.  106).  Four stages were used to organize the experiences that the participants described: 1) feeling that something was wrong with them prior to their diagnosis, 2) realizing what the problem was and receiving the diagnosis, 3) learning to live with their disability, and 4) the ongoing process of accepting that they have lived with an undiagnosed LD.  Although participants indicated some feelings of relief at receiving the diagnosis and understanding the root of their difficulties, this study speaks mostly to feelings of loneliness, frustration, grief, shame, and pain.  In her summary of the results, Orenstein (1992) writes,  As the data unfold, the psychological ramifications of undiagnosed learning disabilities as an ever-changing story of frustration and pain become clear.  The participants eventually adapt to and make peace with a familiar old enemy.  The perpetual need to fulfill one’s genetic programming by using one’s constricted intelligence in the face of one defeat after another is indeed a story of courage and willpower.  (p. 49) 31  There is a lack of research that has discussed individuals who have been diagnosed with an LD in adulthood.  Although these individuals have presumably been included as participants in general studies of LD in adults, the time of diagnosis is rarely mentioned.  The development of knowledge and best practices within a field requires multiple studies (Frankel & Devers, 2000).  Given that Orenstein’s (1992) study of adults’ experiences of receiving an LD diagnosis was conducted over two decades ago, and Kong’s study was conducted with specific population (graduate students in the United Kingdom diagnosed with reading LDs), additional research of adults’ experiences of seeking and receiving a psychoeducational assessment and an LD diagnosis is required.   Overall, the experience of receiving and making sense of a diagnosis of a developmental disability has been indicated to be an emotionally significant event.  For some, the experience seems to elicit feelings of confusion, anger, and sadness (Kong, 2012; Orenstein, 1992; Young et al., 2007), whereas others express feelings of relief and hope (Fleischmann & Fleischmann, 2012; Fleischmann & Miller, 2013; Kong, 2012).  Many individuals express frustration at not having been diagnosed earlier (Orenstein, 1992; Young et al., 2007).  The present study aims to gain further insight into the experiences of adults who have been diagnosed with an LD. Summary and the Current Study Research has shown that LDs persist into adulthood (Gerber, 2012; Morris et al., 2009).  Although some research suggests that individuals with LDs can have positive outcomes, people affected with LDs are more commonly linked to poorer employment, mental health, and educational outcomes (Gerber, 2012; Gerber et al., 1990; Holliday et al., 1999; Morris et al., 2009; Nalavany et al., 2013; Wilson et al., 2009).  The severity of LD is negatively linked to one’s functioning and success in adulthood, whereas social support, compensation strategies, and 32  job factors are positively related to job success.  Personal characteristics such as self-determination, perseverance, and effective coping strategies have also been linked to various indicators of success for adults with LDs.  Adults with LDs report facing stigma related to their disability, feeling misunderstood, and feeling like an imposter (Denhart, 2008; Shessel & Reiff, 1999).  As the number of adults pursuing educational goals continues, it is important to gain an understanding of the needs for adult learners.  Drawing from Knowles’ (1970) theory of andragogy, Price and Shaw suggested that adult learners with LDs can be supported in conducting a diagnosis of needs, which will help these adults to understand their strengths and difficulties, and to create a plan to meet their goals.   An increasing number of individuals are seeking a psychoeducational assessment and an LD diagnosis in adulthood (Sparks & Lovett, 2009; Tze et al., 2014).  It is important for researchers and practitioners responsible for assessing and supporting these individuals to gain insight into adults’ experiences of seeking and receiving a psychoeducational assessment and LD diagnosis.  A search of the literature resulted in only two studies specifically examining the experiences of individuals who have been diagnosed with an LD in adulthood (Kong, 2012; Orenstein, 1992).  Given the unique cultural contexts in which these two studies took place, additional research is required to understand the experiences of adults in Canada who have received a psychoeducational assessment and diagnosis of an LD.  The goal of the current study was to examine adults’ experiences of seeking and receiving a psychoeducational assessment and of receiving a diagnosis of an LD.  The following chapter, Chapter 3, will present the research questions, in addition to details regarding the participants, procedures, and analyses used in this study.     33  CHAPTER III: Method The purpose of this study was to explore the experiences of individuals who had sought and received a psychoeducational assessment in adulthood that resulted in a diagnosis of an LD.  This chapter will introduce the research methodology that was used in this study, interpretative phenomenological analysis (IPA).  This chapter will also describe the participants and settings, ethical considerations, procedures for data collection and analysis, and steps taken to increase the credibility of the findings.   Using IPA (J. A. Smith, 1996), a qualitative research method, this study aimed to examine the following research questions: Research Questions 1. What are adults’ experiences of seeking and receiving a psychoeducational assessment? 2. What are adults’ experiences of receiving a diagnosis of an LD? A qualitative approach was deemed to be well suited to address these research questions, as it allowed the participants freedom to describe their experiences from their perspectives.  The following section will discuss the selected approach in more detail. Interpretative Phenomenological Analysis Interpretative phenomenological analysis was deemed to be appropriate for the current study, as the purpose of IPA is to conduct an in-depth exploration of an experience (Creswell, 2007; J. A. Smith, 1996).  Typically, studies using IPA focus on experiences that take on significance to a person.  These types of experiences require individuals to engage in reflection as they make sense of, and give meaning to, an experience (J. A. Smith et al., 2009).  Interpretative phenomenological analysis was initially proposed as an approach to qualitative 34  research by J.A. Smith in the mid-1990s (1996).  Despite its relatively recent development, IPA draws primarily from three longstanding philosophical areas: phenomenology, hermeneutics, and idiography (Shinebourne, 2011; J. A. Smith et al., 2009).  A brief overview of the ways in which IPA incorporates elements of these three areas will be examined here.   Phenomenology.  Edmund Husserl is credited for developing the ‘phenomenological method’(Shinebourne, 2011).  Husserl invited researchers to focus on the subjective experience of a phenomenon in order to identify the core features (or ‘essence’) of the human experience (Shinebourne, 2011; J. A. Smith et al., 2009).  Husserl recommended the adoption of the ‘phenomenological attitude,’ which required one to turn their gaze inward, and attend to the subjective experience of a phenomenon.  As with Husserl’s approach, IPA focuses on methodically and thoughtfully reflecting on a lived experience (J. A. Smith et al., 2009).  Unlike Husserl, who wished to capture the essence of an experience, free of the world around it, IPA wishes only to explore how a particular experience is experienced by particular people (J. A. Smith et al., 2009).  To this end, IPA draws upon the works of the phenomenological philosophers Heidegger, Merleau-Ponty, and Sartre.  These philosophers took the perspective that each person is embedded and embodied in his or her own particular context in the world (Shinebourne, 2011; J. A. Smith & Osborn, 2008).  Heidegger, a student of Husserl’s, emphasized the importance of the person in context, and the concept of intersubjectivity, that is, our shared relationship with the world.  Drawing from Heidegger, IPA takes the perspective that the way by which an individual makes sense of an experience cannot be separated by his/her “being in the world” (J. A. Smith et al., 2009).  It emphasizes the importance of understanding the individual’s lived experience within a cultural and environmental context, and the researcher attempts to understand how each individual perceives and makes sense of an experience or event.  35  Influenced by the work of Merleau-Ponty, IPA takes the stance that researchers can never fully understand the inner experience of another person.  Rather, effort is made to get as close as possible to the participant’s thoughts and understanding of an experience (J. A. Smith et al., 2009).    Hermeneutics.  The IPA approach also draws from hermeneutics, which places an emphasis on the researcher’s interpretation of the participants’ understanding of an experience (J. A. Smith & Osborn, 2008).  This approach acknowledges that the researcher cannot be separate from his or her own experiences and preconceptions.  Although these preconceptions may complicate the analyses, they also contribute to the researcher’s interpretation of the participants’ experiences (J. A. Smith et al., 2009).  The researcher understands that there may be a hidden meaning behind the participant’s words, and that there may be multiple plausible meanings (J. A. Smith, 2004).  In this way, this method involves two levels of interpretation, which is referred to in the IPA literature as a double hermeneutic (2008): the participant interpreting his experience, and the researcher interpreting the participant’s interpretation of the experience.  The hermeneutic circle describes the dynamic, iterative approach to the method of IPA.  This approach holds that to understand the part, one must look to the whole, and vice versa.  In IPA, the researcher moves back and forth between multiple levels of interpretation of the data (J. A. Smith et al., 2009).      Idiography.  Interpretative phenomenological analysis is also influenced by idiography, focusing on the particular.  Thus, conducting IPA requires that each participant’s experience is analyzed in detail, as a single experience, before looking for connections across participants’ experiences (J. A. Smith et al., 2009).  The researcher looks for not only ways in which participants’ accounts converge, but also the divergence between participants’ experiences.  A 36  goal of IPA is to give the reader an understanding of themes that were shared across participants, as well as providing information that was specific and unique to each individual.  In addition, this method is inductive; typically, a semi-structured interview is used, allowing the participants’ responses to guide the interview, and allowing themes to emerge during analysis (J. A. Smith, 2004).  Thus, the goal of IPA is not to look for cause-and-effect relations, to confirm a hypothesis, or to make generalizations, but to explore and interpret a phenomenon that has been experienced by the participants.  Finally, IPA maintains a goal of contributing to prior research and existing literature.  The results of the study are discussed within the context of existing literature, and can be used to prompt additional research (J. A. Smith, 2004). Limitations of IPA.  As with any methodology, IPA has its limitations.  The goal of IPA is to provide a rich, in-depth analysis of how a small, specific group of individuals makes sense of an experience.  This approach allows for the analysis of the ways in which participants’ experiences are similar and ways in which they are unique (Shinebourne, 2011).  This emphasis on the individual is an attractive feature of the approach; IPA has also received criticism for the emphasis placed on the individual, at the expense of the context (Todorova, 2011).  In a related vein, the use of a small, homogeneous sample makes it difficult to judge the transferability of the findings of a study using IPA (Pringle, Drummond, McLafferty, & Hendry, 2011).         Many studies using IPA report using a semi-structured interview (Brocki & Wearden, 2006).  Brocki and Wearden (2006) note that the interview schedule may shape the structure of the analysis and the themes that are identified.  Brocki and Wearden also note that the role of the researcher as interpreter also may introduce bias into the analyses.  They emphasize the importance of acknowledging and attempting to minimize the researcher’s preconceptions.  37  Finally, IPA has been criticized for its flexible, yet prescriptive approach to analysis (Giorgi, 2010).  Smith and colleagues offer guidelines to conducting IPA, but explain that these guidelines are suggestions only.  Giorgi (2010) described Smith and colleagues’ use of guidelines as a contradiction, in that they are simultaneously providing a set of procedures, but encouraging researchers to use them flexibly.  Nonetheless, the guidelines are appealing to the novice researcher, whereas more experienced researchers may favour the flexibility of the approach.   Conducting IPA.  To conduct an IPA study, data are collected from a small sample of individuals who have all experienced the same phenomenon, in this case, the experience of seeking and receiving a psychoeducational assessment, and of receiving a diagnosis of an LD in adulthood.  There is no set criteria for how many participants to include in the study; case studies with one participant are becoming increasingly popular, but IPA studies typically include between four and ten individuals (J. A. Smith, 2004).  Interpretative phenomenological analysis places an emphasis on depth of analysis and on the importance of maintaining an idiographic focus.  J.A. Smith (2004) notes that smaller sample sizes allow for a richer analysis, and that a good IPA study should provide the reader with the shared themes, as well as the unique voices and differences within those themes.  Unlike other modes of qualitative data collection, data saturation is not the goal (Brocki & Wearden, 2006).  Rather, the researcher aims to keep the sample size small in order to be able to become familiar enough with the data to provide the reader with a deep understanding of each participant’s account (J. A. Smith et al., 2009).  A homogeneous sample is emphasized in IPA, with the goal of understanding how a similar group of individuals make sense of an experience (J. A. Smith & Osborn, 2008). 38  Personal Reflection One of the primary goals of phenomenological research is to allow the subjective experience to reveal itself “on its own terms,” (Larkin, Watts, & Clifton, 2006; p. 108) free of preconceived expectations.  Consistent with Heidegger’s approach to phenomenology, IPA recognizes that the researcher can never fully disengage from his or her preconceptions, but this should not stop the researcher from attempting to do so (Larkin et al., 2006).  One manner in which the researcher can attempt to limit the degree to which his or her preconceptions and biases influence the interpretation of the data is to recognize and continuously reflect on these preconceptions.  Prior to and throughout data collection and analyses, the researcher wrote personal reflections.  The purpose of this section is to situate the researcher in the study and to acknowledge the possible impact of prior experiences and preconceptions on the process of inquiry.  The researcher became interested in adults’ experiences of receiving a diagnosis of an LD during her undergraduate studies.  While attending a university in Scotland for a year, her roommate was diagnosed with an LD in reading.  The researcher spoke frequently with her roommate as he adapted to living with this diagnosis. She noted it to be a significant, positive event in his life.  He joined the university’s dyslexia association, and became an advocate for supporting students with LDs.  Several years later, when the researcher began conducting psychoeducational assessments for adults, that the researcher was reminded of, and began reflecting more thoroughly on, her roommate’s experience.  As a school psychologist in training, the researcher has experience assessing adults in a university setting, and diagnosing them with LDs.  Although most clients that the researcher has seen sought re-assessments, she has provided several first time diagnoses, and found these assessments to be unique.  The researcher found 39  these clients to be more invested in the assessment process, and to feel a lot of anticipation regarding learning of their diagnosis.  It seemed that the diagnosis came as a relief, but that the results could be overwhelming and confusing.  The researcher, having not spoken to clients following their experience of receiving the diagnosis wondered how their understanding of the diagnosis changed over time, and whether they had received support. Recruitment Procedures Participants were recruited in three ways: first, flyers (see Appendix A) were placed around the campus of a large university campus.  Second, the co-director of a university based assessment clinic in a large metropolitan city in Western Canada contacted previous clients of the clinic via mail and email (see Appendix B).  These initial contact letters provided information regarding the study, and the contact information for the researchers, should the clients wish to take part in the study.  All individuals who were contacted were informed that they were in no way obligated to take part in the study, and that if they agreed to participate, they could opt out at any time.  Third, clinicians at the same university based assessment clinic were provided with information about the study, and asked to provide an informational letter to any clients who met the inclusion criteria for the study.       All interested participants were asked to complete a screening questionnaire, either over the phone or via email (Appendix C).  Participants who met the inclusion criteria were selected on a first-come, first-serve basis.  The BC Government definition of “non school-age adult,” (British Columbia Ministry of Education, 2015) which includes individuals who are over the age of 19 as of July 1st of the current school year, was adopted for inclusion criteria.  Thus, as part of the inclusion criteria, participants were required to have had a psychoeducational assessment that resulted in the diagnosis of an LD when they 19 years of age or older.  Although it was not a 40  requirement that it was the participants’ first psychoeducational assessment, it must have been the first assessment that they have received over the age of 19, and to have been the first assessment that had led to a diagnosis of an LD.  This allowed for adults to participate if they had received a psychoeducational assessment in childhood, but did not receive a diagnosis until a later assessment in adulthood.  In addition, the participants may have received other assessments or diagnoses unrelated to the LD, such as a diagnosis of ADHD or an anxiety disorder; however, it was emphasized that the purpose of the study was to explore the LD diagnosis.   The current study included six adults between the ages of 25 and 49 who had received a psychoeducational assessment that had resulted in a diagnosis of an LD.  Table 1 describes participants’ ages at the time of the assessment, primary and additional diagnoses, education level at the time of the assessment, and time between the assessment and first interview.  The sample included four female and two male participants (Max and Ren).  Five of the participants were Caucasian, one was Asian (Ren).  All participants had been raised in North America.  The participants had received their psychoeducational assessments between one and four years prior to the first interview.  Additional participant information will be presented throughout the narrative of the findings, where relevant.  This information provides important contextual information, and rather than presenting a participant biography here, it has been included within the narrative of the findings, where it was particularly relevant to the interpretation.   41  Table 1  Participant Characteristics Name* Age at assessment Primary diagnosis Other diagnoses (by self-report) Education level at time of assessment Jenn 25 LD in Math ADHD, Anxiety, PTSD 1st year university  Sharon 41 LD in Math and Reading Query ADHD 1st year university  Max 40 LD in Reading, Writing, and Math  Grade 12 Ren 36 LD in Reading Gifted 1st year university  Grace 25 LD in Reading ADHD 3rd year university Laura 49 LD in Reading, Writing, and Math  4th year university *Pseudonyms used to protect the confidentiality of participants Participants’ psychoeducational assessment reports were not reviewed.  Rather, the researcher depended upon participants’ verbal confirmation that they had received a psychoeducational assessment and LD diagnosis.  It was decided that the assessment report would not be reviewed to limit the potential biases that may arise from the researcher reading reports.  Because the psychoeducational assessment process was a focal point of this study, it was important to confirm that students had indeed received a psychoeducational assessment, as opposed to a different type of assessment, such as a psychological or a non-diagnostic learning assessment.  To ensure that all participants had received a psychoeducational assessment, participants were read a definition of the assessment, including the procedures that are involved.  All participants agreed that the definition and procedures were consistent with their experience.  42  To further control for some of the variability across diagnostic procedures, it was decided early in the recruitment stage that participants would be recruited from the same university-based assessment clinic. Research suggests that there is a great deal of variability in the methods used to diagnose LD (Gyenes & Siegel, 2014).  For instance, research has indicated that approximately half of postsecondary students come to their institutions without the appropriate documentation to have received a diagnosis of an LD (Gyenes & Siegel, 2014; Harrison, Nichols, & Larochette, 2008).  The university-based assessment clinic provides assessments to adult students at various educational institutions, including adult education centres, colleges, and universities, in the surrounding area.  Adult students may self-refer, or may be referred by parents or advisors to the clinic.   All assessments were conducted by groups of two clinicians; a primary clinician and a supervising clinician.  Primary clinicians included practicing school psychologists and doctoral level school psychology students.  Supervising clinicians included practitioners who were certified school psychologists or licensed psychologists.  The assessment process typically includes an interview of the adult client, a review of any relevant records that the client may have (e.g., prior assessments, report cards/transcripts), and approximately two to four assessment sessions.  The assessment sessions typically includes the administration of one or more cognitive batteries to assess cognitive functioning (e.g., the Wechsler Adult Intelligence Scales, Fourth Edition) and the administration of tests of academic achievement (e.g., the Wechsler Individual Achievement Test, Third Edition).  The clinician then writes a comprehensive report of the assessment results.  Assessment reports include background information, a description of the results of the assessment, including relevant diagnostic information, and recommendations for the client and the educational institution.  The clinician then meets with the client, and 43  individuals invited by the client (e.g., partner, friend), to discuss the results of the assessment.  All clinicians at the clinic also offer the client the opportunity to have an additional meeting, which may be with the client and/or other individuals that the client feels may benefit from consultation, such as the disability advisor.  The clinic holds regularly scheduled calibration sessions to ensure that consistent, high-quality services are provided across clinicians, and that assessment procedures align with requirements of various educational bodies (e.g., postsecondary colleges and universities).   Data Collection Two semi-structured interviews were conducted with each participant at the university assessment clinic (four interviews) or over the phone (two interviews).  Although IPA studies may begin with a brief literature review, the researcher attempts to bracket his or her preconceptions in order to design the interview protocols.  Thus, although the semi-structured interview was conducted with some degree of knowledge of the relevant literature, the researcher attempted to maintain an open-mind and general curiosity about the topic as she created the interview protocol. The specific studies that were read prior to the creation of the interview protocol included Young and colleagues’ (2007) study of adults diagnosed with ADHD and Merkel’s (Merkel, 2010) study of parents’ experiences of the feedback meeting of the psychoeducational assessment.  The interview protocol was constructed based on recommendations by J.A. Smith and colleagues (2009).  Specifically, the researcher considered the range of topics she wished to explore, designed open-ended questions designed to address these questions, and included a small number of questions and appropriate prompts.  As one method to make the participant feel more comfortable, the interview began with broad questions, gradually working towards more specific, and possibly more personal questions, a technique that 44  J.A. Smith and Osborn (2008) call funneling.  The initial interview protocol included six questions.  This was redesigned after the first two interviews, in consultation with the researcher’s dissertation committee (see Appendix F for interview protocol).      During the first meeting, the consent form (see Appendix D) was reviewed in detail, and confidentiality and the limits to confidentiality were discussed.  Next, the participant was asked questions regarding demographic information (Appendix E).  The semi-structured interview was then conducted, in which participants were asked open-ended questions regarding their experience of receiving a psychoeducational assessment.  Consistent with the IPA approach, the participant was viewed as a storyteller, and was allowed to maintain control of the interview.  Using this approach, the interview protocol was seen as a guide only, such that it was possible that not all questions were asked of each participant, or asked in the same way (J. A. Smith & Osborn, 2008).  The participant was allowed to lead the interview in a different direction than expected by the researcher.  The interviewer attempted to build rapport with the participant, and to gain an understanding of the participant’s world.  The first interviews ranged from 44 to 90 minutes in length, with an average interview length of 66 minutes.  Following the interview, participants were given the opportunity to ask questions and debrief their experience of the interview, and were given a list of supportive services (see Appendix G).    Prior to the second interview, the first interview was transcribed.  The researcher created an informational summary of each participant’s first interview, including the main content of what was discussed in the first interview.  This summary was sent via email to the participant to review.  The participant was asked to review the summary to remind them of what was discussed, and allow him/her the opportunity to reflect on any aspects of the first interview that he/she would like to clarify or speak more about.  The provision of the summary and the second 45  interview itself were used to gain early descriptive validity, or a check of primary understanding (Huberman & Miles, 2002).  This step allowed the researcher to confirm that the facts of the participant’s account were understood, with minimal interpretation on the part of the researcher.  The second interviews occurred in person (two interviews) or over the phone (four interviews; see Appendix H for the follow-up interview protocol).  During the second interview, the researcher asked follow-up questions that arose from the first interview.  The second interview ranged from 35 to 59 minutes in length, with an average interview length of 40 minutes.   Data Analysis The goal of data analysis using IPA is to gain an in depth understanding of the meaning of each participant’s account of an experience, and to attempt to get as close as possible to the participant’s world.  Data analysis for this study was conducted through an iterative process.  Participants’ transcripts (from the first and second interviews) were merged and explored as a single case, before looking at similarities or themes across cases.  Analysis took place as data collection was occurring, such that analysis of the first participant’s interviews occurred before completing the interviews with remaining participants.  The procedures that the analyses followed were based on guidelines provided by J.A. Smith and colleagues (2009).  These authors emphasize that these guidelines are not intended to be prescriptive, and that data analysis involves flexibility.  Data analysis is described as an iterative and inductive cycle; the researcher may shift between different analytic processes as she moves between description and interpretation, and between the part and the whole (J. A. Smith & Osborn, 2008).   To begin initial analyses, transcripts were copied and pasted into a table with five columns within Microsoft Word.  The column headings were: Initial notes, Row number (to allow for identification of extracts), Speaker, Original transcript, and Emergent themes.  To 46  begin analyses, the researcher reviewed the first participant’s transcript, while listening to the audio recordings of the interviews.  This step allowed the researcher to gain a general picture of the participant’s experience. The complete interview transcript was re-read several additional times, which allowed the researcher to enter the participant’s world, and immerse herself in the data.  During each reading of the transcript, the researcher made notes in the “Initial notes” column.  This step resembled a free textual analysis, such that there is no requirement to divide text into meaning units.  Rather, the researcher noted anything that stood out in the transcript.  Some of these comments were descriptive, describing key objects of concern for the participant, such as relationships, events, and values.  Comments also reflected the meaning of those objects of concern for the participant.  More abstract, interpretive, and exploratory comments also developed, as the researcher considered the lived world of the participants.  Initial notes can be characterized as descriptive comments, linguistic comments, and conceptual comments (J. A. Smith & Osborn, 2008).  Descriptive comments refer to comments that summarize or describe the things that mattered to the participant, using key words, phrases, or explanations used by the participants.  These notes reflected key objects of concern for the participant, with a focus on taking the content at face value.  As analysis continued, these descriptive comments were developed into richer accounts of meaning.  Linguistic comments were those that explored the language used by the participant, including pronoun use, metaphors, and other notes about the participant’s transcript, such as pauses, repetitions, laughter, or crying.  These linguistic comments could allow a descriptive comment to become more interpretive.  Conceptual comments refer to more abstract comments, including early possible interpretations and exploratory questions.  Exploratory questions are prompts for the researcher, which allowed her to move away from the overt meaning of the participant, leading to a more abstract interpretation 47  of the data. These comments and questions often pointed to a range of provisional meanings, and often lead to personal reflection, brainstorming, and refinement of analyses.   After the transcript was read several times, the transcript was reviewed once more, and notes that captured an emergent theme were written in the right-hand column.  Emergent themes aim to maintain the complexity of the initial notes, while reducing the volume of detail.  These themes were somewhat more abstract than the initial notes, allowing for connections to be made within and across cases, while remaining clearly connected with the original statement by the participant.  The main objective was to produce a concise statement that captured the critical elements of a piece of transcript.  Here, the researcher entered the hermeneutic task of interpreting the part in relation to the whole and the whole in relation to the part.  The themes reflected not only what was said by the participant, but also the researcher’s interpretation of the meaning of those words within the participant’s transcript and life world.  Some themes remained more closely tied to description, whereas others were more interpretive.   All of the themes for the first participant were then listed in a separate document with corresponding extracts from the transcript, in chronological order.  This document was printed and the themes and extracts were cut out.  Extracts were placed on the floor, and the researcher then began to examine the themes for connections.  As connections between the themes were made, the themes were physically reorganized in a more theoretical manner, clustering themes together.  As J.A. Smith et al. (2009) note, some themes “act as magnets, pulling other themes towards them” (p. 96).  As themes were clustered together, some themes encompassed others as a broad theme, a process referred to as subsumption (2009).  For other clusters of themes, a new broad theme was created to capture the meaning of the cluster, a process referred to as abstraction.  Throughout this process, the researcher continued to refer back to the original 48  transcript, to ensure that the original meaning was not being lost, and that the themes did indeed conceptually cluster together.  This process illustrates the essence of IPA; although theoretical interpretations were being made, there was a conscious effort continuously to ensure that the interpretations aligned with what was actually said by the participant.  The final step in the analysis of the first account was to construct a table of themes.  A Microsoft Excel file was created; the themes that clustered together were listed in the table with relevant extracts from the transcript, and a title that was representative of the cluster of themes was created as a broad theme.   After the analysis of the first account, the researcher proceeded to the subsequent interviews, and repeated the process.  Although each account was treated as a separate case, the themes from the first interview were used to inform the analyses of each subsequent account, and existing themes were adjusted based on data from subsequent accounts.  This tactic allowed for patterns to be identified across cases, while caution was maintained to examine each case for individual differences.  The researcher made an effort to be open to new or conflicting experiences.  If new broad themes were created in the analysis of subsequent transcripts, prior transcripts were reviewed to look for possible examples of this broad theme.  After analyzing each case, the researcher looked for patterns across cases.  This process led to changes in the configuration and labelling of themes, as connections and differences became apparent.  During this step, a Microsoft Excel file was created, with a separate sheet created for each broad theme, and analyses continued as some themes were changed or relabeled.  Within each sheet, the themes that fell within each broad theme were listed with corresponding illustrative data from each participant.  At this point, themes that provided the richest data were included, whereas themes were eliminated if they were not seen to be relevant to the research question.   49  The final step in the analysis was completed through writing up the results of the analyses, in which a narrative account of the themes was created, including descriptions and examples of each theme for the reader.  J.A. Smith and colleagues (2009) state that the narrative should move between telling each participant’s story from his or her perspective to describing the researcher’s interpretation.  Enough detail should be provided to allow the reader to gain insight into the participant’s account and the researcher’s interpretation, and to appraise the fit between them.  The write-up forms Chapter 4 of this manuscript.   Ensuring Quality and Scientific Rigor Several strategies were employed to ensure a high level of quality and commitment to scientific rigor within this study (Creswell, 2007; Yardley, 2008).  The purpose of these strategies in IPA research is to assess the trustworthiness and quality of the study. Given the emphasis on the researcher as an interpreter in IPA, these strategies are intended to examine the trustworthiness and plausibility of the findings as one possible interpretation, rather than to verify the interpretation.   First, a researcher who has research experience in the area of phenomenology listened to the researcher’s first interview to provide feedback on the researcher’s interview style.  This process was used to ensure that the general interview procedures were being followed, that the researcher did not ask leading questions, and was asking appropriate follow-up questions.  The external researcher provided the researcher with descriptive feedback in person, and met with the researcher a subsequent time to discuss the researcher’s initial analysis of the interview. To gain descriptive validity (Maxwell, 2002), participants were provided with a summary of their first interview, and were provided with the opportunity to clarify and comment on the summary during a second interview.  Descriptive validity refers to the factual accuracy of the 50  researcher’s understanding of events or behaviours described by the participant.  Descriptive validity does not call for interpretation, but is used to ensure that the researcher understood the information provided by the participant.  Sensitivity to context is central to ensuring the quality of research in IPA (J. A. Smith et al., 2009; Yardley, 2008).  Sensitivity to context includes attending not only to the socio-cultural context of each participant, but also to the existing literature on a topic, and to specific contextual information provided by participants.  In this study, the very use of IPA implies that each participant’s life-world, or context, is critical to understanding his or her experiences.  To employ the double hermeneutic that is central to IPA (the researcher making sense of the participant making sense of a situation), the researcher must take the participant’s and the researcher’s context into account.  To understand participants’ context, demographic information was collected.  In addition, the researcher was attentive to cultural and contextual information that participant’s provided within interviews, such as information about their past.  The interview protocol also included questions that were designed to provide the researcher with an understanding of the participant’s sociocultural context (e.g., “What do think your family/community think of LDs?”).  In writing the results, care was taken to provide a number of verbatim quotes from each participant, thereby demonstrating sensitivity to the raw data, and allowing the reader to get a sense of the participant’s context.  The current document includes thick, rich descriptions of participant selection, interview procedures, and data analysis.  These descriptions increase the transparency of the research process and allow the reader to judge the transferability of the findings.   To further guarantee that this study was of high scientific rigor, the researcher conducted additional member checks following data analysis (Creswell, 2007).  To conduct member 51  checks, participants were provided with a final table of broad themes and subthemes and were asked to provide their feedback regarding the fit of the themes with their experience (see Appendix I and Appendix J).  This step was used to assess the credibility of the researcher’s interpretations.  Participants were asked if the researcher’s interpretations make sense, based on their experiences, with the caveat that the interpretations may not fit for them exactly, but were logical for someone who has experienced this phenomenon.  Of note, the names of the broad themes and subthemes sent to the participants changed slightly following the member checks (unrelated to the member checks), but the essential meanings have remained the same.  Five of the six participants responded to the request for member checks.  The five participants indicated that the themes made sense for them, and captured their experience.  Four participants indicated that they were not surprised by any of the categories.  One participant answered that she was surprised by the categories, adding the comment, “I was interested to see that there were so many similarities between my experience and the experiences of others.”     Interpretative phenomenological analysis recognizes the researcher’s conceptions in the interpretation of data (J. A. Smith et al., 2009).  Based on hermeneutics, it is acknowledged that the researcher’s perspective will shape the interpretation of the data, but that the researcher’s biases will be revealed and revised as interpretation occurs (Shinebourne, 2011).  Smith and colleagues (2009) note that one may not be aware of preconceptions that are relevant to the interpretation until interpretation begins.  However, it is also important to acknowledge that preconceptions may represent a barrier to interpretations, and that it is important for the researcher to attempt to conduct interviews as a naïve listener.  In order to do so, one should acknowledge the preconceptions that are held regarding the phenomenon in question, and consistently review and reflect on one’s preconceptions and prejudices throughout the research 52  process (Shinebourne, 2011).  To increase the quality of the research, the researcher engaged in researcher reflectivity throughout the study, in order to acknowledge and clarify any bias that may impact the study (Creswell, 2007).  The researcher wrote personal reflection memos prior to and throughout the duration of the data collection and analyses.  In addition, the researcher attempted to maintain an open, inquisitive outlook during each interview, and attempted to suspend preconceptions during interviews and analyses.   The researcher also engaged in peer review and debriefing (Creswell, 2007).  This process allows the researcher to engage in brainstorming and receive feedback from peers throughout the research process.  Specifically, during the planning and data collection stages, the researcher met with a school psychology doctoral student who was completing an IPA study on a similar topic.  In the analysis stages, the researcher met with a practicing school psychologist who has experience conducting psychoeducational assessments with adults and another graduate student who has experience conducting qualitative research.  The researcher met with the peer reviewers regularly throughout the study.  The peer reviewers asked the researcher questions about the research process, assisted with brainstorming, and provided the researcher with critical feedback.    An independent audit was also conducted, as suggested by J.A. Smith, Flowers, and Larkin (2009).  To conduct an independent audit, an individual who was not affiliated with the project was given materials including a summary of the research project, the interview schedule, one interview recording, one annotated transcript, the researcher’s tables of themes, and the final write-up of the results.  The auditor was asked to review and give feedback to the researcher as to whether the final write-up was logical and grounded in the data, based on the materials provided.  The auditor was a certified school psychologist who has extensive experience 53  assessing adults and has taken a graduate level course in qualitative research.  The purpose of the audit was to ensure that there is a clear and logical path through the chain of data that allows the auditor to understand how the researcher’s claims were made (J. A. Smith et al., 2009).  The auditor provided the researcher with verbal descriptive feedback, indicating that the results were logical and related to the original data.      Ethical Considerations Ethical approval was obtained by the Behavioural Research Ethics Board at the University of British Columbia.  The nature of the current study included ethical issues that were carefully considered.  First, it was acknowledged that participants may experience unwanted emotions during or after discussing the psychoeducational assessment or diagnosis that they received.  Receiving a psychoeducational assessment that results in a diagnosis can be an emotional process, and discussing the experience may cause the individual to relive uncomfortable emotions, or may cause the individual to process the results in a different way, which may bring about new emotions.  Participants were provided with information regarding community resources (see Appendix G), such as disability centres and counselling services.  It was made clear to potential participants that they were in no way obliged to participate, and the researchers would not know the identities of individuals who did not want to participate.   To ensure confidentiality of participants, identifying information was not recorded on interview protocols, and all interview transcripts were identified by a numerical code.  Pseudonyms are used in this report to protect the identity of the participants.  Finally, descriptive information of participants was removed or changed if it could be used to identify participants (e.g., if a participant has a unique job).   54  CHAPTER IV: Findings The purpose of this study was to understand adults’ experiences of seeking and receiving a psychoeducational assessment, and to explore their experiences of receiving a diagnosis of an LD.  Interview data gathered from six adults were analyzed using an IPA approach.  The current chapter presents the results of the analyses.  The findings are organized by the two research questions. The focus of the first research question (What are adults’ experiences of seeking and receiving a psychoeducational assessment?) evolved as data collection and analyses occurred.  As interviews and analyses proceeded, it became clear that participants did not reply in much detail or depth to questions related to the actual experience of receiving a psychoeducational assessment.  Although this was an area of interest for the researcher, given her preconceptions of this experience having meaning for individuals, and the lack of research focusing on this experience, it soon became clear that this was not an area of significance for the participants.  Throughout interviews, participants tended to bring the conversation back to i) experiences prior to the assessment, ii) experiences seeking the assessment, iii) experiences receiving the results of the assessment, and iv) the meaning of the LD diagnosis/label, which is the focus of the second research question.  The participants provided rich descriptions of their experiences prior to and following the assessment, with little focus on the experience of the assessment itself.  When asked more directly about the assessment itself, it seemed difficult for participants to expand on their experiences.  Responses about the assessment itself included brief factual descriptions (e.g., “I can’t remember if we did the testing process in two parts or one part,”), and brief impressions (e.g., “It was fun.”).  These comments were in stark contrast to rich, complex descriptions provided in response to other questions.  The focus of interviews and analyses evolved based on participants’ responses, and the results provided here reflect this evolution. For simplicity, these 55  results are presented within the context of the first research question, as these responses arose as the experiences around seeking and receiving a psychoeducational assessment were explored.  These themes reflect experiences that relate to the reasons that participants provided for seeking their assessment, and their experiences seeking the assessment.  Participants also described their perceptions of the clinician, and their difficulty understanding the results.  Four broad themes and five subthemes were identified (see Table 2).   Table 2 Research Question 1: Broad Themes and Subthemes Broad themes Subthemes Reviewing the past o Feeling different/inferior o Experiencing a lack of understanding/support from others  Pursuing the assessment   o Pursuing goals: The assessment as part of a journey o Receiving messages: Outside voices o Experiencing apprehension and anticipation  Perceptions of the clinician   Understanding the results     For the second research question, which related to the meaning of the diagnosis of an LD for participants, four broad themes and 11 subthemes were identified (see Table 3).  The themes presented in relation to the second question refer to perceptions and experiences that have occurred since receiving the diagnosis.   56  Table 3  Research Question 2: Broad Themes and Subthemes  Broad Themes Subthemes Gaining insight and perspective on the past  o Gaining insight into a hidden self o Experiencing validation o Feeling compassion for past self  Making sense  o Digging deeper: Exploring the diagnosis o An unravelling of self: The diagnosis and                the sense of self. o Questioning   Conceptualizing a new self  o Revised self-concept o Feeling a sense of self-efficacy o Feeling a sense of choice and                              responsibility  Reflecting on the LD and society  o Perceiving stigma and disclosure o Questioning the system    Extracts relevant to each theme are included to provide the reader with an example of the themes.  Not all relevant extracts are included; however, several extracts are provided for each theme to capture the nuances, convergences, and divergences within a theme.  To aid in readability, quotes have been edited to remove filler words (“um”, “like”), repetitions, and false starts, and brief responses made by me (“hmm,” “Okay”).  Ellipsis points (…) are used to signal omitted information and dashes (-) are used to signal long pauses.   Research Question 1.  Seeking and Receiving a Psychoeducational Assessment  The first research question addressed participants’ experiences of i) seeking and ii) receiving a psychoeducational assessment. As noted, participants had little to say about the experiences of receiving a psychoeducational assessment itself, but did reflect on experiences that related to that experience (their perceptions of the clinician, and their understanding of the 57  results of the assessment).  The identified themes and subthemes relate to 1) participants’ experiences prior to the assessment, which provided context for their decision to seek an assessment; 2) experiences seeking the assessment, which relate to their reasons for seeking the assessment and the apprehension that they experienced, 3) participants’ perceptions of the clinician, and 4) participants’ perceptions of their ability to understand the results.  These themes and subthemes are depicted below. Theme 1: Reviewing the past.  This broad theme refers to participants’ descriptions of living with an undiagnosed LD.  All participants described their experiences and perceptions of themselves prior to the assessment.  Participants discussed not only their childhood, but also their experiences as adults entering and participating in postsecondary education and the workforce.  Two subthemes were identified.  First, participants spoke of having always felt different or inferior to peers with regard to their intelligence, character, and motivation.  Second, participants shared experiences of feeling misunderstood or unsupported by the people around them.  Many of the participants spoke of significant distressing events or “traumatic experiences” in their past.   Feeling different/inferior.  All participants described having felt different from others or inadequate compared to their peers prior to their diagnosis.  These feelings were most commonly discussed in relation to intelligence and learning.  For instance, Jenn explained that she had always believed she was “dumb” and “weird.”  These beliefs were ingrained in her self-concept prior to diagnosis, which was evident in her description of starting her diploma to become a Medical Laboratory Assistant.  She said, “I could see that I was different than [sic] other students, but I still thought it was because I’m an idiot.”  Similarly, Grace said, “I definitely went through periods of thinking that I was stupid,” and noted that this feeling was driven primarily by her comparison of herself with her peers.  She became emotional when she said, “I’ve felt 58  inadequate in a lot of ways growing up.  I have felt different than [sic] my peers and I never really knew why.”  For several participants, they had held the belief that their difficulties were due to laziness or procrastination.  This was especially true for Ren.  He explained, “For me, it was one hundred percent: any of the failings that I had had academically were because of my efforts.  There was no doubt about that, none.”  This extract illustrates the belief that many participants described holding prior to their diagnoses: their difficulties were due to some internal characteristic (such as being “lazy” or “dumb”), for which they were to blame. Participants also discussed their difficulty succeeding in academic subjects throughout their lives, despite their added effort.  Participants’ beliefs that they were different or inferior to peers were exacerbated when their additional efforts were ineffective.  Sharon, in particular, discussed spending many hours studying and doing homework, with little improvement in math.  She said,  With no matter the effort, not being able to - ‘cause I’m a very studious person, and all that kind of stuff.  And I come from a family of teachers as well (laughs) that know twenty ways around trying to learn material.  And just no way, no how, could I force it into my brain.   Sharon discussed her “family of teachers” several times, and noted, “There's always been an element with me, ‘Just work harder, just work a bit harder, just work a bit harder.’”  It was interpreted that Sharon’s family valued hard work, and her work ethic and studious nature was a source of pride.  As a child, Sharon hoped that she could overcome her difficulties if she could just put in enough time or effort.  Sharon spent many hours studying and doing homework, 59  hoping that she would overcome her learning difficulties, despite the evidence to the contrary (“no way, no how, could I force it into my brain.”).   Participants’ experiences of feeling different or inferior persisted into adulthood.  Several participants expressed that they felt like an imposter in their postsecondary programs or workplace.  Grace described her experience receiving her acceptance letter to the dietetics program and wondering if her acceptance was a mistake, because she felt like she was not good enough for the program.  Laura spoke of her experience at work, and said, “I was always feeling like, when are they gonna find out?”  In this excerpt, Laura is indicating that she was continuously waiting for her superiors at work to “find out” about her perceived inadequacies.  Similarly, when Jenn began her diploma program to become a Medical Lab Technician, she explained that she worried, “They are going to friggin’ find out that I’m not meant to be here!”  These excerpts indicate that participants’ inner beliefs undermined their experiences of success.  Despite their achievements, these participants felt like they were fooling others, and it was just a matter of time before the truth would be revealed.     Max also discussed the feeling that he needed to hide his difficulties form others.  Max experienced significant difficulty across all academic areas.  He explained that he could not read or write, but used strategies to hide his significant academic difficulties in adulthood.  He said, Working job after job, without even being able to write or understand writing, and you know, making it up, looking at people, [saying to them], “Yes, okay, that's wonderful! Yes, that's correct, that's correct.”  Baby, I can't read this if I wanted to.  Because you all don't spell the way I do.  But I would never tell a person that because I was always so embarrassed of myself, because here again, as a child, and now as an adult, I'm thinkin’ I'm nothing more than a failure, because I cannot read like normal people. 60  This excerpt from Max illustrates the feelings of difference, isolation, and inferiority, which were experienced at times by all participants.  Although he could not read or write, he could successfully hide this fact from others, and was alone in his struggle.   Experiencing a lack of understanding/support from others.  Participants recalled feeling misunderstood and unsupported by the people around them, particularly parents and teachers.  For the most part, participants had received messages over the years from others that they were not trying hard enough in school, and could do better if they applied themselves.  This was particularly true for Ren, whose mother always told him that he needed to try harder in school.  Ren explained that both he and his mother saw his difficulty in school as a personal flaw, and that his academic difficulties were due to a choice that he had made.  Ren discussed the importance of education in his mother’s family, and discussed his Asian culture as particularly relevant to his mother’s reaction to his academic difficulties.  After he was not initially accepted into university, Ren’s mother kicked him out of the family home.  In reference to this period of time, he talked about joking with his other Asian-Canadian friends,  Someone will say, “Yeah, did you get disowned?” “Yeah, I got disowned!” Right?  And so we joke about it, but the reality is, it is like an exile.  Like, you’re being exiled from the family.  And I think at that age like 18, 19, you know, kind of when the world is also coming down on you and everything is new, and there’s probably a lot more support needed during that time in how to deal with all kinds of things.  You know, yeah, it really is, it’s like just being unlovable, like…you know, to have your mother say “Nope,” like, “You don’t belong in this family.  You don’t come to Christmas.  You don’t come to Thanksgiving.  You don’t do this, you don’t do that.  Don’t bother calling me, I don’t wanna call you.”  You know, ‘cause it’s that tough love, but to the extreme. 61  Ren’s explanation indicates that his lack of success in academics resulted in him being exiled from his family, making him feel “unlovable”.  Ren described the period of time following his being kicked out of the house as a “full on war” between him and his mother and discussed losing his identity “as a son.”  His failure to be accepted into university was interpreted by Ren and his mother as due to a character flaw, which resulted in him having “no sense of worth.”      Although not all participants experienced the same degree of negative fallout from academic failings as Ren, it was evident that experiences of receiving negative messages from others were influential to all participants.  For instance, Laura described the following situation in high school, after her mother passed away, I was struggling in high school, and there was a counsellor that probably was not very appropriate and indicated that, you know, I wasn’t doing very well, I should never expect to do well, that my IQ had actually dropped.   Jenn and Max spoke about receiving messages from others that they were less intelligent, which shaped the way they saw themselves.  Jenn said, “All the feedback I had received before in my life had been like, ‘You’re an idiot’.”  Jenn explained that she started to believe these messages, indicating that others’ comments influenced her own self-concept.  Max spoke at length about having been misunderstood by the adults in his life, who told him that he was mentally ill and said to him, “You know, you're just a retard, you're never going to amount to anything, etcetera, etcetera.”  Grace described receiving implicit, rather than explicit, messages from the adults in her life.  For instance, she assumed that her parents thought that her learning difficulties were due to her “socializing and goofing off in class”.  Like others, Grace also 62  believed these implicit messages from others to be true, and carried forward the belief that her academic difficulties were due to her lack of effort.   Some participants talked about how the lack of understanding from others continued into adulthood.  For instance, Laura discussed feeling misunderstood at work.  She described the feedback that she received from her supervisors at work to illustrate her sense of feeling misunderstood.  She said, They would say, “You know, this is really well, but you know, your spelling and your grammar isn’t great, and you know I’m sure if you were organized more, and if you went to this time management class, and if you went to this detail class, you know everything would magically go together.”  And you know, “Why aren’t you like me?”   Laura laughed when she spoke about this experience, but indicated that her supervisors’ perceptions had limited her capacity to grow in her job.   Laura’s statement that supervisors wondered, “Why aren’t you like me?” indicated that Laura’s differences were not understood by those around her.  Laura interpreted this message as indicating that she was different, and that being different was perceived negatively by others.   There was an impression from several of the participants that the misunderstanding and lack of support from the adults in their lives was the reason that they had not been assessed earlier.  For instance, Max explained, “If just, elders would have just slowed down and stopped assuming, this would have all been changed years ago.”  Several participants indicated that the adults in their lives never wondered about the possibility of an LD because they were not doing poorly enough in school.  Sharon conveyed that her learning difficulties were overlooked when she said,  63  You know, frankly, I think my brother was doing so extremely well, that he kind of got attention for that, and my sister was doing so, so badly, that it was kind of, you know, extremes?  So somehow, because I was always a good student and I always got good marks, that it was nothing caught their attention.   Sharon indicated that she was a student who attempted to compensate for her difficulties by putting in additional work.  Despite the hours of extra work, she believed that nobody around her noticed how difficult school was for her, because she was able to achieve good marks.  Some participants shared experiences in which they had felt supported in their past.  Jenn explained that, “I had some teachers that believed in me, but again, they still thought I was dumb.”  Jenn seemed to believe that everyone around her, even teachers who were supportive, believed that she was less intelligent.  Ren also described an experience in an adult education class in which he felt supported and understood.   I ended up just having a really good relationship with that English teacher, and telling him like, “I can’t get into University if I don’t pass this course.”  And so he made, you know, a lot of accommodations for me.  He said, “Look just hand in this paper,” you know, ‘cause the original, first [paper], obviously I didn’t do well.   These excerpts indicate that there were moments in which some participants felt understood and supported, but these experiences were overshadowed by times in which they felt misunderstood and unsupported with regard to their learning difficulties.   Theme 2: Pursuing the assessment.  This broad theme represents participants’ perceptions of their experiences pursuing the assessment.  Within this broad theme, participants described the assessment as part of a journey, in which they were already pursuing educational or career related goals.  This broad theme also describes participants’ experiences with outside 64  voices during their pursuit of the assessment, and includes participants’ emotional experiences of seeking the assessment.      Pursuing goals: The assessment as part of a journey.  When participants discussed their experience of seeking an assessment, all participants situated their assessment within a larger journey.  Specifically, having described their past difficulties, participants described that they had begun their pursuit of educational or career related goals.  All participants were pursuing educational goals when they sought their assessment.  Most participants were also pursuing a new career goal, and had returned to education after time away.  Participants described turning points in their lives, which were the markers along their journey from difficult pasts to more positive futures.  Seeking the assessment was interpreted to be a part of this larger life journey.   Max explained that it was his pursuit of completing his high school education that led him to the assessment.  Max’s determination to complete his education was apparent throughout the interview.  He tied the goal of receiving his education into his life story when he said, “I’ve gone through more hell… than most people could endure.  And you know what?  It’s a story.  The biggest one was, not having that education.”  For Max, the assessment was not the goal, but was interpreted to be essential for achieving his goal of an education.  Receiving an education would be proof of how far he had come from his childhood.     Similarly, Jenn spoke of a number of turning points and significant events in pursuing her goal of becoming a nurse, which led her to the assessment. She said, “I’ve had key things happen in the past two years… you know how things kind of lead up to something but that [the assessment] was just like that final ninety degrees.” When she discussed seeking and receiving the assessment, she said, “I feel like I was somewhat on that path anyway to realizing my 65  potential.”  As with Max, Jenn’s pursuit of education in the time leading up to the assessment represented a change in her life’s direction.  The assessment was one part of a journey that brought Jenn from a difficult past to a more hopeful future.    After his failure to be accepted into university, Ren had begun to abuse alcohol and illicit drugs.  His recovery from alcoholism and addiction was interpreted to have formed the basis of his journey, into which the assessment fit.  Recovery represented a personal turning point for Ren; he spoke several times about lessons that he had learned in recovery, which appeared to guide him in his interpretation of the assessment and diagnosis.  After recovering from his addictions, he started postsecondary education to pursue a career as an entrepreneur, which is what led him to the assessment.  He said,  I was already on that pursuit.  Prior to my entering university I had been an entrepreneur, I had run a few businesses, and then I started getting into philanthropy and stuff, right?  And so I was already getting into that work of, you know, make the world a better place kind of business.   Laura, who was the oldest participant, had returned to postsecondary education to complete her Bachelor’s degree.  She was in the process of self-exploration when she sought the assessment.  She explained about her experience taking a variety of classes at university:  And you get to kind of find out about what kind of excites you and what makes you tick.  And so, having my learning disability testing done in that environment was really ideal for me ‘cause it all sort of fit into that process. Having been widowed when her son was young, Laura had been a single mother to her son.  She spoke of feeling pressured to stay in her job while her son was growing up, because it provided financial security.  It was interpreted that Laura had not been able to focus on her own 66  academic interests (“what makes you tick”) until her son was independent and she had the time and resources to return to university.  Laura’s journey to the assessment was longer than the other participants.  She explained that her son was diagnosed with an LD at a young age, and she had advocated for him during his school years.  Having observed the similarities between her son’s academic difficulties and her own, she had long suspected that she had a similar LD.  She explained her decision to seek an assessment, saying,  It was kind of like housecleaning: it was like, okay there’s been all these cobwebs in this closet for a really, really long time, and I’m in that closet now, and I can really see them.  And I can choose to continue to ignore them, or I can choose to do something about it.   Like the other participants, Laura had always known that she learned differently from others, but it was not until she had returned to university to pursue her undergraduate degree that she began to think seriously about an assessment.  It seems that the learning environment placed her “in that closet” in which she was encountering new academic challenges, and she could no longer ignore her academic difficulties.  Taken together, these excerpts are interpreted to indicate that participants perceived their decision to seek the assessment as part of a larger journey.  Receiving messages: Outside voices.  This subtheme refers to the role of other people in participants’ pursuit of answers for their learning difficulties.  Most participants discussed their experience of the LD diagnosis being suggested to them when they were seeking support from an instructor (teaching assistant, professor), or health care professional.  For instance, Sharon was seeking support for math when her tutor mentioned a possible LD.  She said, “After about three sessions he looked at me and said, ‘Have you ever heard of dysgraphia?’  And when I started pursuing it, it very much fit kind of the symptoms I was having.”  Several participants echoed Sharon’s experience of finding that the description of the LD “fit” for her.   67  Max first heard of dyslexia when he went with his parents to listen to a speaker giving a talk on the topic.  Max laughed when he explained, That's how this whole thing started, because he handed out these papers and so I had to [answer questions] with my parents, while he was talking.  And so, out of 21 questions I had 20 of them that all literally spelt dyslexia. Jenn heard a TV personality speaking about auditory processing disorder.  The description of the auditory processing disorder resonated with her and caused her to pursue that diagnosis.  Her pursuit for answers eventually led her to the psychoeducational assessment.  She had seen an audiologist, her doctor, and an ADHD specialist before seeking the psychoeducational assessment.  Similarly, Grace had also seen a family doctor and an ADHD specialist after a teaching assistant suggested that she seek support for her academic difficulties.  These accounts indicate that the psychoeducational assessment was not the beginning of a journey for the participants.  Rather, participants had been actively seeking information or support, which led them to the assessment.   Several participants also described negative or unsupportive messages from others in their journey to seek support and answers.  In the following excerpt, Jenn describes her experience of asking her disability advisor for information about the assessment:   She was like, “Well, like, why? You already have your diagnosis of the ADHD or you know, like you have all the accommodations that you know are applicable, like why would you wanna do that?”  And …I was like, “Can I have the info anyway?”  And even when I went in, I was just like, “Is this kind of stupid me doing?” [because] she discouraged me. 68  Laura similarly described her experience when she was getting her hearing tested in preparation for the assessment.  She said that the doctor testing her hearing said to her, “Well maybe you’re just one of those people that’s just not gonna be very smart and you just need to accept that.”  Taken together, the excerpts in this subtheme illustrate the experiences of support and lack thereof that participants described as significant in their pursuit of the assessment.   Experiencing apprehension and anticipation.  This subtheme refers to the emotions that arose for participants when they were seeking the assessment.  Most of the participants discussed feeling a mix of emotions in anticipation of the assessment.  For many, there was a sense of excitement about the possibility of receiving information, which may provide answers and direction for support.  Grace illustrated the feeling of excitement and hopeful anticipation, when she said, I was going into it, I don’t know, I guess like excited a little bit just to go through it and to be able to [say], ‘Okay, here will be a chance to have more information to hopefully just shed some light on the situation, and be able to maybe change the way that I do things.’ Despite this excitement, many participants discussed an underlying feeling of fear related to the possibility of negative results.  The uncertainty of what the assessment would reveal appeared to be the root of the concern for participants.  Max’s account illustrates the range of thoughts and conflicting emotions that he experienced when seeking the assessment. The emotion that I had felt was - I was scared because I wasn’t sure what the outcome was gonna’ be.  I wanted to be right, I wanted to be wrong, I wanted to prove my elders wrong, I wanted to prove the demons wrong.  I wanted to prove to myself that I could do anything that I wanted to, and at the same time, I was so terrified of trying to figure out 69  who I was.  Having no identity, I knew that meant ripping what I did have away and leaving me the absence of the unknown.  And trying to figure out what I was trying to become and who I wanted to become to the point of [wondering], am I gonna’ be able to get educated?  Am I not gonna’ be able to get educated?  Am I just gonna’ be mocked and ridiculed? Max voiced the doubts and uncertainty that was described by all of the participants.  Max’s excerpt also conveys a sense of vulnerability; he feels little control over the assessment, and the assessment results will tell him the truth about himself.  He recalled the negative voices (internal and external) that had been present for many years.  He felt aspects of his identity and his future were dependent on the outcome of the assessment.  His excerpt indicates that although he hopes to ‘prove my elders wrong’ (who had told him that he was inferior), the prospect of having to find a new identity was overwhelming.   The fear of the assessment results was, for some participants, related to their preconceived notions of the meaning of having a diagnosis of an LD.  This was the case for Ren, who explained, “I mean obviously I didn’t wanna take it, first off, right? I don’t wanna admit that I have a learning disability; that reaffirms my defectiveness.” This excerpt highlights the influence that preconceptions of LDs can have on one’s decision and emotions around seeking an assessment.  Ren believed he would be “faulty” if it was confirmed that he had an LD.   Jenn discussed the feeling of apprehension that was present throughout the assessment sessions.  She reported that she had cried during the mathematics portion of her assessment session, when it became particularly difficult, and her apprehension of the results was heightened.  She said, “I was just scared to have it like affirmed that, you know, you’re an idiot.”  70  She noted that she would have preferred to have had more testing sessions, because she was afraid to answer questions at the initial sessions, but became more comfortable as time went on.   Several participants discussed the temptation to avoid the assessment altogether.  Jenn, having been discouraged from receiving the assessment from a counsellor, said that she saw the discouragement as “an out.”  She noted that it would be easier to avoid the assessment and, “live in sweet oblivion.”  Sharon also talked about not wanting the diagnosis, and said, “There's also an element that then you have to face it as well, ‘cause then it's a fact.”  This sentiment gives the sense that results of the assessment will provide participants with the truth about their difficulties.  Although participants explained that they had always known that there was something different about them, they had been able to overlook or ignore this feeling.  There is also a sense that the assessment holds some degree of authority, which would make their learning differences a reality that could no longer be ignored.   Despite the apprehension and temptation to avoid the assessment, most participants gave the impression that they felt committed to getting the assessment.  For instance, Jenn explained, I remember thinking this is such a twisted gamble I have to play on myself ‘cause here I am - I’m a student - I have to put out this money, and it’s a gamble basically against yourself.  And I was like, this is how serious I am, like I think something is up.   Jenn’s excerpt highlights the conflict that she felt with regard to the assessment.  Hoping for an LD diagnosis is like a “gamble against yourself,” but she was committed to getting the assessment in order to get some answers.  Similarly, Laura explained, “I was pretty determined by the time I got here that I was gonna’ follow through with it because I needed to know kind of what was going on.”  Although Laura felt apprehensive of the outcome of the assessment, her desire to get answers outweighed her apprehension.   71  Theme 3: Perceptions of the clinician.  This broad theme refers to the influence that clinicians had on participants’ experiences of receiving an assessment.  Reference to the clinician was made throughout the interviews, and can be seen within several other themes.  This broad theme refers specifically to the participants’ positive or negative perceptions of the clinician.  Several participants mentioned the positive influence of the clinician on their experience of receiving the assessment.  Max and Jenn, in particular, discussed the significant positive role that the clinician played in their experience of the assessment.  Max reflected on his first assessment session with his clinician.   Because, you know, she wasn't a teacher, she didn't look down upon me, she didn't frown upon me, she didn't say I was mentally ill, she didn't try to label a diagnosis.  She sat down with me and said “Ok [Max], let's do this.  Show me what you can do with this and let's do this together.  That way I can help you to help me, so we can help each other.” And it was fantastic! The second she said that I was just like, “Oh my God, I love you, thank you.” Max’s excerpt suggests that his clinician treated him with respect, and that they were working toward a common goal.  Max indicated that his clinician’s demeanor and actions assuaged his feelings of apprehension, and helped to make the assessment a positive experience.  Similarly, Jenn’s description of her clinicians indicated that they were perceived to be allies and cheerleaders.  This was evident when she described her final meeting with the clinicians.  She said, “But for me I could, you could just feel the connection, and it became like you know like this - these huge - I don’t know, they were just rooting for me I could feel.”  Jenn’s reaction indicates that she perceived her clinicians to be important figures, who enriched her experience of the assessment. 72  Laura did not form the same strong connection with her clinicians as Max and Jenn, but did note, “Both of them were pretty good at what they did.  And you know both of them were very empathetic, worked really hard to make me feel comfortable, were quite clear and concise, but you know very graceful about it.”  Grace noted that her clinician was “really kind and whatever,” but mentioned several times that she perceived her clinician to be lacking experience.  She explained, “I could tell that my clinician, at least I thought it was her, maybe her first time, or she was very new to it.”  Thus, although Grace perceived her clinician to be kind, her perceived inexperience negatively influence her experience of the assessment.  Grace’s negative perception of her clinician was particularly relevant to her experience of the final feedback meeting, as will be discussed in the following theme, Understanding the results.   Theme 4: Understanding the results.  This theme represents the difficulty that participants had understanding the results of the assessment.  Participants also spoke of the role that the clinician had in helping or hindering the participants’ understanding.  For instance, Jenn explained, “They showed me my results and I didn’t really understand.  I think too because it’s like you’re looking at it and you’re like, what the hell does this mean?”  Jenn’s excerpt speaks to the overwhelming experience of trying to understand the results of the assessment that most participants described.  Not only are participants trying to understand the results, they are also attempting to understand what this means for them and their future.  Jenn also discussed how, due to her positive relationship with her clinicians, she was wary to ask questions, as she thought that would make them think less of her.  She explained, “I just didn’t wanna let them down and have them now realize like, like look you’re an idiot.”  So, although Jenn spoke highly of her clinicians and had a positive relationship with them, this relationship made it difficult for her to tell them that she did not understand the results.   73  Sharon discussed the amount of information provided by the clinicians during the feedback meeting, saying, “They’re very, very thorough, they went over everything with me - a lot of data all at once!”  Sharon’s excerpt was interpreted to indicate that although she found the amount of data to be somewhat overwhelming, she appreciated the diligence that the clinicians took in reviewing her results.   Ren voiced his confusion of the results saying his first reaction was, “Like I don’t understand words or?”  But he explained that when his clinician showed him the results on a graph, the information made more sense.  He also noted the difficulty reading the written report, given his difficulty with reading.  He said,   I think it’s because through her explaining it in that shape structure that I go and say, “Oh, maybe that is how I understand things,” to then kind of carry that forward.  So the actual assessment paper, no I think a lot of it’s written, and so I think after sentence number two it’s like, “Ahhh!”. Ren’s description of his reaction to trying to read the report (“Ahhh!”) indicated a sense of frustration.  Given his difficulty with reading comprehension, the feedback meeting was crucial to Ren’s understanding of the diagnosis.   Grace’s difficulty understanding the results and the meaning of the diagnosis was significant for her and appeared to be limiting her ability to move forward with the diagnosis.  She talked several times about her confusion during the feedback meeting, and her perception that her clinician was lacking experience.  For instance, of the final meeting, she said,  I wanted to know answers but I didn’t really know what questions to ask either.  And I didn’t feel like [the clinician] could really help me through those either.  I felt like she was, we were both kind of like, new to this.   74  Although Grace was the only participant who mentioned feeling that her clinician was lacking experience, her excerpt illustrates the overwhelming feeling of confusion that was shared by most of the participants.  The information presented to Grace was so unfamiliar and complex, that although she knew that she wanted answers, she did not have enough of an understanding to ask the appropriate questions.   Laura did not note the same initial confusion as other participants.  This was interpreted to be due in part to her prior knowledge and experiences, due to her experience of her son having received psychoeducational assessments.  Based on her prior experience, she had specific expectations of the results, which aligned with what she was told at the feedback meeting.  She noted, “You know I would have been shocked if they would have said, ‘There’s no learning disabilities here at all, like what are you talking about?’  Then I probably would have been like, ‘Really?’”   Research Question 2.  The Meaning of the Diagnosis  The following results represent responses relating to the second research question: What are adults’ experiences of receiving a diagnosis of an LD?   Four broad themes and 11 subthemes are presented.  Specifically, the first theme relates to the role of the diagnosis in providing participants with an insight into themselves and perspective on their past.  The second theme refers to participants’ descriptions of their efforts to make sense of the diagnosis (and of themselves with the diagnosis).  The third theme refers to the participants’ revised conceptions of themselves with the diagnosis.  Finally, the fourth theme addresses the role of society and stigma in reference to the diagnosis.  Although there is a sense that these broad themes flow in a temporal progression, they are not intended to be interpreted as a linear set of stages through which the participants passed.  Rather, responses reflect participant’s interpretation of their 75  experiences and perceptions at the time of the interviews.  Participants’ perceptions of their experience of receiving an LD diagnosis will be influenced by their current experience in relation to the world (Larkin et al., 2006).  As Grace noted, “I think these are just my thoughts, like currently, as I’m just thinking them right now”. Theme 1: Gaining insight and perspective on the past.  A broad theme that was identified was the role of the diagnosis in providing participants with insight into themselves, specifically with regard to their cognitive and academic capabilities.  In addition, the results provided participants with insight and a new perspective on the past.  The results allowed participants to assess the validity of previously held self-concepts, and the messages that participants had received from others such as being different, less intelligent, or “lazy”.  As Jenn said, “It gave a new platform to which I could look back on the past from.”  Similarly, Ren noted, “It allows me to dig back and go, ‘Oh wait a second’.”  Three subthemes were included in this broad theme: 1) Gaining insight into a hidden self, 2) Experiencing validation, and 3) Feeling compassion for past self.   Gaining insight into a hidden self.  Participants shared the perception that the assessment results provided them with insight into a part of themselves to which they otherwise did not have access.  As was discussed in Theme 1 of the first research question (Reviewing the past), participants explained that they always felt different or inferior to others.  The assessment was interpreted to be the key in providing them with the insight into why they always felt different from others.  Receiving the diagnosis seemed to give the participants emotional comfort and relief, as this unknown piece of themselves was finally revealed.  For instance, Laura said, “because it has a name, I don’t have to imagine what it might possibly be,” and went on to say, 76  When I didn’t know what it was, it was like this sort of this unknown.  I don’t know how to explain it.  It’s like if you’re not feeling well, and you’re not sure why you’re not feeling well, it could be anything from a mild cold to cancer.   Although Laura explained that she was not surprised by her diagnosis, her account indicated that she had been worrying about the source of her learning difficulties.  Laura’s comparison of her learning difficulties to health problems speaks to the hidden and unknown nature of one’s own cognitive and academic functioning.  Just as one often requires the expertise of a physician to reveal the root of health difficulties, the participants indicated that they required the assessment to reveal the root of their learning difficulties, as they do not have access to this information themselves.   Several participants indicated that the diagnosis was the missing piece to understanding their learning, and this lack of understanding was holding them back from succeeding.  For instance, Ren talks about the assessment as being a “big piece of the puzzle” and said,  I think the assessment acted like a key.  Yeah, it just kind of opened up a door of answers that you know, was always there; we just never knew.  Yeah, we just never knew.  My family and everyone involved,… my experience of life, and everybody that I had relations with that it would affect, they just never knew.   Ren’s explanation indicates that the diagnosis provided him with an insight into a part of himself that was not only hidden from him, but also from those around him.   Similarly, Jenn’s description indicated that the results represented a missing key to her understanding of herself when she said, “‘Cause there’s always been one thing holding me back and that was what it was”, and went on to say, “Until you know what the problem is, how can 77  you work on it?”  Jenn’s explanation implies that the diagnosis accounts completely for the “one thing” holding her back, providing her with complete insight into her learning differences.   Upon hearing of her diagnosis, Grace stated, “I know there is something missing, like something I haven’t been told about, right?” and, “I’ve never been told this before, but it makes sense.”  Throughout the interview with Grace, she indicated continued feelings of “brokenness” and feeling different.  She discussed having, “all these things that I do in my life that, that are ‘off’ you know, like weird ways of thinking like, just like perfectionism tendencies and I don’t know …like I can’t say that this [learning disability] is the only cause of that.”   Unlike Jenn, who indicates that the assessment provided her with a complete explanation of her difficulties, Grace said, “I think I don’t know the truth about myself.”   There is a sense that although the assessment provided Grace with some insight into a hidden part of herself, there is still a piece of herself that she is waiting to be uncovered.   As with other participants who felt that their diagnoses made sense, a diagnosis of a math disorder resonated with Sharon.  However, Sharon was surprised by the additional diagnosis of a reading disorder.  Sharon reflected on her past experiences in high school where she always did well in English class, saying, “So - I mean - I had a learning disability [in reading]? Who knew?”  Sharon’s quote indicates that the results revealed something that was inconsistent with her perception of her reading skills.  Despite her surprise at this diagnosis, Sharon indicated that she took the results at face value and felt more prepared for future academic challenges.   Some participants indicated that the assessment also provided them with insight into why they do things the way that they do.  Max said that the assessment results provided him with insight into who he is.  He said, “[It explains] how I think, how I react, exactly how I respond and why I do the things that I do, why everything is so repetitive for me, why I’m like this.”  78  Similarly, the results provided Grace with insight into why she may have procrastinated in high school.  She explained, “I think now that I look back on it it’s probably a portion of it was me procrastinating because things were hard and I didn’t know how to deal with them so I just put them off.” Sharon described how the assessment results provided her with insight into how her academic weaknesses may have influenced the career path that she has taken.  She said, “I have gone into a career and things in my life that were my limitations actually were beneficial.”  She also discussed how the results have allowed her to realize the ways in which she has compensated for weaknesses, such as learning how to skim long written reports and finding key information.   Some participants gave the impression that they felt that the clinicians were key figures in providing them with insight into their hidden selves.  Jenn, who felt a significant bond with both clinicians, noted how they knew her “as a whole,” and revealed patterns in her past that she had not seen before.  Sharon, who was surprised at the diagnosis of a reading disorder, noted, “it was quite surprising to me that they found the Reading one.”  Her use of the words “they found” suggests that the diagnosis was something that she could not access herself, but required the insight of the clinician.  Similarly, Max referred to the power of his clinician when he said, “She gave me a life that nobody else could.  It’s not that my, my adoptive parents didn’t try.  They didn’t know how.”  In this quote, Max seems to be suggesting that his clinician was the only person in his world who could provide him with information that he learned through the assessment results. Experiencing validation.  Participants shared their feelings of relief and comfort in response to learning their assessment results.  Specifically, they spoke of the validation that the 79  results provided, because they offered evidence against previous self-doubts and the negative messages from others.  This was especially true for Max.  In the excerpt below, Max describes his initial reaction to his LD diagnosis.  He reported that he thought to himself,  Oh my God.  I'm a person.  I'm okay.  I'm actually really authentic.  I just have to have to learn differently than other people.  As opposed to being told I'm stupid.  As opposed to being told, "You know, you're just a retard, you're never going to amount to anything, etc., etc." This is what I was always taught.  Now all of a sudden at the age of 39, going into 40, that that's not the case at all. For Max, the feeling of validation from the assessment results was immediately meaningful in many ways, and he explained that it positively impacted many aspects of his life.  Jenn also spoke of the significant feeling of validation that she felt when she was leaving the final feedback meeting with her clinicians.  She said,  I just remember walking out and, I kid you not, my life changed after that, because for the first time in my life, and I was 25 years old, and I swear to God, it was the first time I knew I wasn’t an idiot.  I knew I was smart.   Similarly, upon hearing the results of his assessment, Ren said he felt “awesome,” because, “I knew I was smart,” and Laura said that the assessment was, “about sort of an affirmation about who I am and what my strengths are.”  So, although participants were being given a diagnosis that was based on strengths and weaknesses, most participants described feeling an immediate sense of validation and comfort, and insight into their strengths.   For Jenn and Max, the clinicians represented advocates and allies, who were key figures in providing them with a sense of validation.  Jenn explained, “It was an outside source being 80  like, you’re okay.”  Multiple times throughout the interview, Max shared that his clinician was an angel and that she “Saved my life.” Unlike the other participants who indicated feeling validation almost immediately upon receiving the results of the assessment, this feeling only came later for Grace, when her academic coach explained the results, and she began to understand the meaning of the diagnosis in a different way.   So for me I fell into the, I met all of the areas in terms of intelligence level but my performance in certain areas was like quite a bit lower.  So she just explained that to me which was really good to hear.   Grace expressed a desire that her clinician had explained her results in a more positive light, which would have allowed her to experience feelings of validation earlier.  She remembered, “Her demeanor was really kind and whatever, but she didn’t like say kind of what I felt like I needed to hear.”  Unlike the other participants, who felt some validation immediately upon hearing the results of their assessment, Grace’s initial reaction was somewhat more negative.  As her understanding of the diagnosis increased over time, she began to feel more validated by the results, although she shared that she continued to struggle to see “the strengths and like, the good things” in her assessment results.   In addition to describing a sense of affirmation regarding their strengths, participants also discussed feeling validated upon learning that their academic struggles were “legitimate” difficulties due to an LD, rather than being due to a personal flaw or fault.  The results offered evidence against the doubts and messages from others that their difficulties were due to laziness, or that they were not real.  For instance, Sharon said,  81  It kind of validated some of the difficulties I was having, because as I said I’ve always been very studious, and at the time trying to pass this course which was essential for the career I was going to go into, like there’s no choice, there’s no way around it, there was no exceptions: I had to pass this course.  I was probably studying 10 hours a day and it wasn’t happening, so I think it took a bit of pressure off that.  That it wasn’t for want of effort.   Sharon spoke frequently about being studious, which suggests that being studious was a valued part of her identity.  Sharon had always thought that she needed to “just work a bit harder,” but her hard work did not lead to improvement.  Through this interpretation, it can be understood that learning that her difficulties were not “for want of effort” would be an important and validating experience for Sharon.   Ren also expressed that the results provided evidence that his difficulties were not due to a character flaw or personality trait:  Like, where we were looking for personality or character traits that were dysfunctional in the past, or where I was looking at that in the past, or my mother was looking at, you know, my desire to do well or my ambition or any of those personality traits or lack of, no longer was it that.   This excerpt represents an important revelation for Ren, as hard work and academic achievement were highly valued characteristics by his mother and his Asian heritage.  As his perceived lack of ambition had resulted in him being “exiled” from his family home, the results provided Ren with validation that his difficulties were not due to a lack of effort.  Similarly, Jenn succinctly captured the validation and new understanding that the results provided her, with 82  regard to her feelings of laziness.  She shared, “I thought it was because I was lazy, it was because I didn’t do this good enough, and it gave a new perspective.”   The assessment results were validating for Laura not only with respect to her difficulties in her university courses, but also within the workplace, as she had received negative feedback from work supervisors about her editing skills.  She said,   But it was reaffirming I guess that it wasn’t that I wasn’t trying hard enough, or you know, that I was being lazy and I wasn’t editing well enough.  That you know, that I was working with sort of a different view of the world.    Although the results did not necessarily change the fact that Laura would have difficulty completing certain work tasks or meeting her employers’ expectations, learning that there was a reason for her difficulties (which was not her lack of effort), was validating. Feeling compassion for past self.  In addition to providing participants with insight into their hidden selves and validation, the results provided a new perspective on past struggles.  Participants shared a sense of compassion for their past selves.  The term ‘past self’ seemed appropriate here as a reflection of participants’ altered perspective on their past difficulties, which is in contrast to their previous conception of their difficulties.  Grace started to cry when she said,  So I guess with the knowledge that I have now, I look back on my childhood and I think I kind of, I’m almost giving myself a bit of slack like - it’s hard for me to say now, but I guess like I did the best with what I knew then.   Grace’s excerpt suggests that she could now have a new sense of empathy and forgiveness for her past self.  Other participants also became emotional when they spoke of their past.  Participants had a new sense of appreciation for how much they had struggled, and 83  expressed a sense of compassion for this struggle.  This recognition of past struggles was especially true for Jenn.  Jenn’s childhood and adolescence were made difficult by her parents’ divorce, a number of moves, experiences of emotional abuse, and family mental and physical health problems.  She defined her adolescence as a “prison sentence.”  Jenn described an emotional experience in the feedback meeting with her clinician.  When she was having difficulty understanding what the results meant, one of her clinicians leaned across the table and said to her, “It means you’re a survivor!”  Jenn discussed how this statement from her clinician caused her to “break down” in the meeting.  She illustrated the way in which her assessment results allowed her to feel a sense of compassion and pride in her past self, saying, “And it was the first time that it was like, ‘No, look where you came from.’ And it was the most validating experience of my life.”  Jenn’s recognition of being a survivor allowed her to feel a sense of pride and respect for her past self, recognizing how far she had come and how many obstacles she had overcome.  She spoke of finding her old report cards from school.  She said,  And so I look at those report cards completely differently now, and I almost think, I’m not proud of them, but they are just tokens I think of where I’ve been.  Yeah just tokens, and so I look at those even differently now.  I don’t look at them with pride, but I feel like I own it because I see how hard I worked too, I see the struggle I guess in them. The sense of pride and ownership for one’s past, as described by Jenn in the above excerpt, was shared by several of the participants.  For instance, Laura said, “The diagnosis sort of put me in a place where I could say well like, it’s my story now.  I own it.”  Similarly, Max also spoke of feeling a sense of ownership over his traumatic past, and discussed the change in perspective that the results provided him.  Max had grown up in an environment that included exposure to prostitution, abuse, alcohol, and drugs, and he explained that he never knew “what 84  normal was.”  He explained that he could now be proud of how far he had come, as he had a new understanding of his struggles.  He stated, “When I look upon my life now, even through the trauma, it's like, ‘Wow.  Look at where I am now’.”  Max did not seem to carry resentment or anger regarding his past.  Rather, he said, “I learned what I needed to know through the pain of it all.” And went on to say, “I'm now free.  I can talk about the pain, the shame, and know that I'm okay, and I'm a human being.  And now, what I have is a story.”  Although he owns the story of his past, Max’s excerpt suggest that he no longer feels attached to the pain and shame of the person who he thought he was, because he now understands that he is okay.   Several participants similarly indicated that the results allowed them to forgive the past, rather than causing them to feel resentment or anger for the past.  For instance, Ren spoke of how the results provided him with a new perspective on his past troubles with his mother.  Of the results, he said, “It just took all the blame off of her, you know, me blaming her.  And it took all the guilt off of me.”  Similarly, Jenn said, “It helps heal the path.”    Theme 2: Making sense.  This theme refers to a process of adjustment and sense-making that was described by participants.  This process involved researching, reflecting upon, and exploring the meaning of the diagnosis, how the diagnosis relates to their sense of self, and the implications of the label.  There are three subthemes that describe the different ways in which participants made sense of the diagnosis.  Although not all participants experienced the process of making sense in the same way, participants’ responses indicated that they all spent time adjusting or processing the diagnosis.  Participants discussed different ways in which they attempted to understand their diagnosis, including through research, seeking support, and engaging with others with LDs. 85  Digging deeper: Exploring the meaning of the diagnosis.  This subtheme refers to the ways in which participants attempted to understand the results of the assessment and the diagnosis.  This involved activities such as reading and researching, discussion with others, and reflection.  Participants explored the conceptual aspects of the diagnosis, such as the definition of an LD, as well as aspects of the diagnosis that were specific to them, such as their own strengths and weaknesses.  Understanding and exploring the diagnosis was a particularly prominent theme for Grace.  Grace had spent time exploring the diagnosis through reflection, discussion with several friends who also had LDs, and with her academic coach, with whom she spoke on a regular basis.  She discussed how her coach helped her to understand the results, and said, “We talked a lot about, like where my strengths are and then where my weaknesses are and that kind of thing.”  As previously discussed in the subtheme Experiencing validation (Broad theme: Gaining insight and perspective on the past), it was in speaking with her academic coach that allowed Grace to feel validation and see the positive aspects of her diagnosis.  Grace was also taking a university course related to disabilities and justice, and participated in another study related to supporting students with disabilities.  She discussed her involvement in these activities in a positive light, indicating that they allowed her to explore and understand her own disability.  She said that her engagement in the university course was prompting her to think more critically about the language related to disabilities and had been applying what she was learning to her own situation.  She also discussed how “hearing other people’s stories have been really important.”   Ren also talked about how it took, “Some time obviously to dig deeper into research.”  He also noted, “It took some time to understand what it means to have this kind of a disability and ability, ‘cause it’s both.”   Here, Ren described an aspect of the diagnosis to which several 86  participants referred: the diagnosis provided participants with information about their strengths and their weaknesses.  In addition, Ren alludes to the time it takes to make sense of the somewhat conflicting information provided by the diagnosis, that of disability and ability.  Although the diagnosis was validating and provided information about strengths, it also carried with it a message of stigma.  The difficulty making sense of these somewhat conflicting messages will be discussed further in the subtheme, Questioning.   Sharon also discussed how the assessment and results prompted her to research her disability and said, “It really kind of has provoked an interest in it [LD], ‘cause it’s really interesting.  So I’m still in the midst of understanding exactly what it means.”  Like Grace, Sharon shared that her coursework (to become a psychiatric nurse) was helping her to understand her diagnosis.  Laura’s previous experience with her son’s LD had informed much of her experience processing the diagnosis, but explained that she had read a book on LDs to help her to understand her diagnosis.  She said, “I could read through it and kind of take out of it what was interesting and important and what wasn’t.”  Here, Laura is indicating that not everything that she read about LDs seemed relevant to her, which may speak to the heterogeneity of the diagnosis.  Laura’s excerpts indicate that her understanding of the diagnosis was informed by prior experiences, but that she used new information to evaluate and adjust her understanding of the diagnosis.   Despite her involvement in different activities related to exploring her diagnosis, Grace said that she still did not fully understand her diagnosis, and expressed some trepidation in learning more about it.  She said,  87  So I have the opportunity to like to learn more about the disability and like press into it and, but because I don’t know how, and it just seems like such an overwhelming thing.  It’s easier to say, “Okay I’m gonna think about that later.”   Like Grace, Ren indicated some hesitation in learning more about his disability, saying, “I would like to, maybe if I had more time, but I’m a little fearful of that.  I think it might be a bit of a rabbit hole.”  Ren and Grace seem to be apprehensive of the possibility of being overwhelmed or having a negative reaction to learning too much about their diagnosis.   An unravelling of self:  The diagnosis and the sense of self.  Another aspect of making sense of the diagnosis was considering the meaning of the diagnosis with regard to one’s sense of self.  Participants indicated that the diagnosis offered new information that challenged participants’ prior understanding of themselves.  Jenn described the impact that the diagnosis had on her understanding of herself.  She said, “All of a sudden I have this assessment that completely changes the way I look at everything.”  She later went on to say,  It was almost like an identity crisis in a way.  ‘Cause I’m like, who am I as a student? ‘Cause before I had always been, like, the underdog, and like, ‘Oh yeah, she made it through and I don’t know how.’ It was definitely like an identity crisis I feel like. Jenn’s excerpt indicates that the diagnosis caused Jenn to question and adjust her sense of identity.  Similarly, Max described the diagnosis as a “360 degree turn” and explained,  It goes back to what I just said; you learn how to become authentically human and it’s all completely different.  You have a whole different identity so then with an identity came this whack of, “Well who am I? I don’t even have an education.” As with Jenn, Max indicates that the diagnosis caused him to question his identity and shaped a new identity.  Ren explained that the diagnosis helped him to understand himself better, 88  and allowed him to feel more comfortable with himself.  He explained the process of discovering his identity with the diagnosis with, “It’s an unravelling of self.  I mean, I get to know who I am.”  Ren’s excerpt seems to be related to the role of the diagnosis in providing participants with insight into themselves.  Prior to the diagnosis, there was a part of themselves that was hidden.  Now, participants are able to get to know themselves with the information that the diagnosis provides.   Participants indicated that understanding themselves with the diagnosis was not a stage through which they had passed, but a process to which they would return in the future.  For instance, Grace explained that she wished to spend more time in the future exploring who she was with her diagnosis.  She became emotional in both interviews, and said that she needed to “work through this more.”  She said, “I want to spend more time like considering just I guess who I am, like who God has created me to be.”  Grace noted that she believed that learning more about her diagnosis could provide her with a better understanding of herself,  I think in learning more about my learning disability, that will kind of give me, I don’t know, kind of like ground me and give me a sense of more of a sense of my identity.  Like I don’t think it’s all wrapped up in that, but will help me just see myself more accurately. Similarly, Jenn explained that she still needed to spend time processing the diagnosis, and that she had not been able to spend the time necessary to make sense of the diagnosis.  She explained that she was going on a ten-day retreat after she finished her nursing program, and said, “ I’m looking forward to that ten days to really just process it all.”   In addition to mentally processing the diagnosis in relation to the self, participants discussed the adjustment period that reflected their attempts to understand their abilities and 89  modify their expectations of themselves.  Jenn described being “on a high” after receiving the diagnosis and felt like she could “take on the world!”  She struggled with taking on too many responsibilities, based on her extreme sense of confidence and the idea that she needed to measure up to the “superstar students”.  When speaking about the period after learning of her diagnosis, Jenn said,  You like have this idea of like what a good student looks like, which is kind of like that.  So then I’m like, okay now, you know, maybe I should be doing this, like, maybe I should be doing all these things.   Jenn explained that she eventually “burned out” from taking on too many responsibilities, and struggled with guilt for not being able to manage her commitments.   That’s probably what I deal with; shame and kind of guilt right now, is because I took on too much and I overcommitted that.  At first it’s like, “Yeah I’m taking on all this stuff,” but when I have to back out of things I feel flaky, like a bad person… Yeah, I don’t know, I just have some guilt with that. Grace similarly discussed her struggle to adjust her expectations for her school work, so that she could find a balance where she feels, “happy with it and also satisfies whatever requirement.  Like, good enough for the Professor’s standards or whatever, but also for myself.”    Like Jenn, Grace indicated some guilt associated with not being able to live up to her personal expectations.  She said,  I think, like a lot through this last year I’ve kind of I’ve had feelings of, like, guilt and shame of I’m, like 26 years old; I should know what to do.  Like, I should know myself by now and I should know how to do school, and I shouldn’t be having these struggles.   90  Grace’s sense of struggle was peppered throughout the interview, indicating that she was having more difficulty than the other participants adjusting to the diagnosis.   Questioning.  Participants also described the questions and feelings of inner conflict that arose due to the diagnosis.  Although all participants indicated that they believed the diagnosis, some participants shared lingering doubts and questions that arose.  For Jenn, she discussed her initial feeling that the diagnosis as feeling too good to be true, which caused her to begin to doubt the results.  She explained, “‘Cause at first when you get it, it’s like ‘Whoa,’ and you’re like, ‘Oh my God!’  But then you start you know like [questioning], ‘Is it true?’”  Sharon indicated that although she took the diagnosis at face value, she questioned whether she had acquired her diagnosis of a reading disorder due to compensating for her math disorder.  She said,  I’m not like, you know, holding out hope that I’ll get it removed or anything like that.  But seeing how they qualify and how they make the diagnosis, I wonder if it’s not an acquired thing.  That if I work on it that I can improve it, we’ll put it that way. The most difficult aspect for several of the participants to process seemed to be resolving the cognitive dissonance that arose from the conflict between the validating aspects of the diagnosis (“I’m okay”, “I’m not lazy”) and the influence of the societal implications that surround the LD label (e.g., the diagnosis is not real, people with LD just need more structure).  This questioning and skepticism was directly addressed by Grace and Laura, who seemed to be in the midst of questioning this aspect of the diagnosis, and was more indirectly addressed by Jenn and Sharon.  For instance, having received many messages over the years that the diagnosis is not real, Laura questioned whether there is a “self-fulfilling prophecy” effect of the diagnosis.  She explains,  91  I think sort of the big question for me or that one that I’m not a hundred percent confident on is the value of a label, or the difference between a diagnosis and a label.  Yes, it’s great that I know what I have, but does that also limit me as well, too?   Here, Laura is not speaking of the limits that might be imposed on her by others (as she addresses when speaking about stigma), but rather, the limits that she may impose on herself.  She wonders if knowing that she has an LD will cause her to function at a lower level than she would if she did not know about her diagnosis.  She goes on to explain,    I think information is power; I think where it breaks down is what you do with that information.  So then when you have that information do you say, “Okay! Well - that’s it.  That’s the only frame you can function in.”?  Or do you say, “Okay, that’s the situation, and then what are your goals?”   And then how do you build bridges or solutions to go from there to where you wanna be?   Laura began to cry in the above excerpt, indicating that she was struggling with this question.  Her awareness of the social conceptions of LDs seemed to be linked to her own doubts about the diagnosis, and of herself with the diagnosis.   Several times, Grace indicated similar worries about the implications of the label on her own actions and perspectives.  She said, “I guess that’s another thing is with the whole label thing is that it can explain things and create an awareness, but you can also use that to justify actions as well.”  Grace reported that she felt that she had been using the label to excuse herself from not working as hard as she might be capable.   Sharon indicated that she felt conflicted about how her life may have been different if she had been diagnosed earlier.  Although she acknowledged that she may have been more successful, she also wondered about the possible self-imposed limitations of the LD.  She said,   92  I wonder if I would have done as well if I’d known.  I’m a dental nurse and a dental assistant.  Would I have been able to be then a dentist or a doctor because that’s what interested me?  But also, if I had that limitation, maybe I would have known I could not do that and it would have limited what I was trying to do? Although Sharon does not directly indicate that she feels that the label causes her to place limits on herself, her uncertainty of the past indicates that she does wonder about this possibility.  Sharon went on to explain that she had been in an advanced English class in high school, and she said she wondered if she would have taken or succeeded in the class “if I'd been told I couldn't do it.  Or I couldn’t read.”  Sharon’s quote suggests that her diagnosis implies that she cannot read, which she believes may have limited her motivation to read in the past.  Sharon’s excerpt illustrates the powerful message provided by the diagnosis.  Although she previously identified as someone with strong reading and writing skills, she now indicated that the diagnosis meant that those beliefs were wrong.    Theme 3: Conceptualizing a new self.  Whereas the previous broad theme (Making Sense) discussed participants’ experiences of making sense of the diagnosis and incorporating the diagnosis into their sense of identity, this section will discuss participants’ new understanding of themselves with the diagnosis.  Specifically, three subthemes from the data were identified, which represented participants’ new self-concept as they moved forward, how they defined and understood the diagnosis, their confidence in their ability to face new challenges, and their sense of responsibility to do well in the academic and work endeavours.    It should be noted that the ‘new self’ is not intended to refer to a final, concretely defined identity, and is not deemed to be a sign that the diagnosis has been “accepted.”  Rather, the new self is a term used to describe the researcher’s interpretation of the evolving sense of self that 93  participants described with their new knowledge of their diagnoses.  Participants indicated that as new experiences occur and knowledge is gained, they may experience new insight and begin to question and adjust their sense of self.  For instance, at the time of the first interview, Jenn appeared to have developed a strong, confident sense of self, which she attributed to the diagnosis.  However, after experiences of stigma and failure, she described an adjustment to her sense of self.    Revised self-concept.  Self-concept refers to how an individual perceives him/herself, or one’s view of oneself (Burden, 2008).  This subtheme refers to the researcher’s interpretation of  participants’ conceptions of themselves with the diagnosis.  At the time of the interviews, it participants’ descriptions of their experiences indicated that they were at different stages of identifying with and incorporating the diagnosis into their understanding of themselves; however, all participants indicated that they had incorporated at least some aspect of the diagnosis into their self-concept.   The majority of participants indicated that their self-concept had been positively influenced by the valued and validating aspects of their diagnosis, and these features had been incorporated into their understanding of themselves.  For instance, Jenn and Ren spoke with certainty and confidence about their intelligence, implying that their self-concept included the validating aspect of being intelligent.  Jenn described her experience of finding evidence in her day-to-day life of how she is smart, which reinforced her self-concept of being intelligent.  She said, “Before I wouldn’t even take notice to it, but now I’m just like, ‘That’s smart of me, and that’s another reason why I’m smart, and that’s another thing that I’m good at.’”  Similarly, Ren’s confidence in his intelligence came across throughout the interviews, and his explanation of his cognitive functioning indicated that he had incorporated this aspect of the diagnosis into 94  his self-concept.  For instance, when speaking of his IQ he said it, “puts me way, way, way, way above other people,” and went on to say, “You know it puts me, in the ability of identifying patterns and just seeing what other people can’t see, you know, I have a mind that’s kind of like a pedigree for it.”  Sharon, who came from a family of teachers, frequently referred to herself as a studious person.  It seemed that hard work and being studious were important, valued characteristics for Sharon.  Although she may have always identified as someone studious, the assessment seemed to have allowed her to accept this characteristic and include it in her self-concept as she moved forward.   Another aspect of self-concept is how the LD is perceived with relation to the self.  All participants spoke of their understanding of their LD.  The researcher identified two defining features of participants’ explanation of their LD.  The first was participants’ descriptions of needing to learn differently than others, and the second was participants’ understanding that the LD was due to a difference in brain functioning.  These defining features were perceived to be out of one’s control.  For instance, Sharon said the diagnosis allowed her realize it was, “just the luck of draw and what your brain dictates.”  Similarly, Ren spoke of the LD as a structural issue.  He noted, “So it was within my body and brains capacity to experience life structurally.”   Many participants spoke of their disability as a “learning difference”, and discussed that they needed to learn differently than others.  For instance, Max said, “I have to learn a different way than other people, so let's get to it.  That's just who I am.”  In addition to learning differently than others, some participants talked about doing things differently from others.  When defining her LD, Laura said, “I kind of have my own secret language and I have my own kind of way of doing things and sometimes people will give me heck at work for, ‘Oh you always make things 95  more complicated than they need to be.’  And you know what, for them it’s more complicated than it needs to be.” Participants indicated that academic and cognitive weaknesses, which had once been a defining feature of their understanding of themselves, now played a minor role in their self-concepts.  For Jenn, who explained that she has always felt dumb and thought she was an idiot, her self-concept had completely changed with regard to her weaknesses.  She said, “I actually feel like I’m a lot smarter than other people, and just because it’s different I have a learning difference.”  For all participants, their LD was defined with reference to “other people,” “normal people,” or “the norm.”  For instance, Max said, “Because I am so opposite other people in the way I think about things and process things, very different, I'm not like normal people.”  Grace, who discussed the impact of labels and societal understanding of LDs throughout the interview said, “The fact that it’s termed a learning disability means that I’m learning differently than someone with a learning ability.  So I guess I’m seeing it more as a different ability than a disability.” Participants indicated that their understanding of themselves with their diagnoses allowed them to be more forgiving of themselves, and alleviated the need to prove themselves or make up for their weaknesses.  For instance, Laura said, “It’s like I don’t have to prove myself anymore.  I kind of have permission to kind of let, let some things go and really get back more focused on what is sort of a thriving kind of nourishing environment for me.”  Similarly, Ren said, “I don’t have to prove anything anymore you know, if anything, it’s more a matter of you know, am I doing the best work I can? And that’s just a personal evaluation you know I know that I’m putting my best foot forward or not and ah and yeah that’s it.” He went on to talk about how he did not feel the need to beat himself up if things went wrong.   96  Similarly, Max indicated that he no longer felt guilty about his difficulties.  He explained, “I don't feel bad about this, because now it's not my fault, it is just simply the way I was born.”  He further noted that, when faced with judgment and criticism from others, his diagnosis allowed him to acknowledge his learning difficulties, saying, “It’s kind of a winning situation for people like me to actually have this because it gives us that, that personal strength….and that boost of confidence to say, “Yeah, that’s how stupid I am.”” He went on to say, “And I can say it boldly, I don’t play this game of dressing it up and making something pretty that’s not pretty, point blank I am severely dyslexic, I learn different from you.  End of conversation.”   Unlike the other participants, Grace indicated that she had not quite internalized the positive aspects of the diagnosis.  However, she noted, “I’m moving away from that mindset of, I did consider myself to be less intelligent and less like able to contribute and all these things, into no that’s not true.  I have abilities and capabilities and I have ways to participate in society and to now like to push for good things.” Feeling a sense of self-efficacy.  Self-efficacy refers to an individual’s belief in his/her ability to produce the necessary actions required to produce certain outcomes (Burden, 2008).  For instance, when met with a specific academic task, such as a math assignment, a person with a high self-efficacy would feel confident in his/her ability to perform at a certain level.  Most participants indicated that they felt a sense of confidence in their ability to accomplish academic and work-related tasks, and indicated that they could envision future possibilities.   As was discussed in the prior broad theme (Making sense), Jenn developed a stronger sense of confidence after learning of the results of her assessment, saying, “It was like being manic, but on a different high because it was like, it was almost from like all of a sudden, like, it’s like, “I can take on the world!”  Although she discussed later experiencing feelings of shame 97  and guilt regarding her difficulty in keeping up with her commitments, she also talked about how her academic self-efficacy and trust in the results had increased over time.  She talked about applying to medical school, and expressed confidence in the success of her application.   You know, like I know in my heart I can.  I don’t have an excuse not to; it’s more just a matter of how long it’s going to take me.  If I work my ass off I can get in, you know, hopefully sooner.  Or it could take like maybe three attempts.  Maybe it could take ten.  But if I keep trying I will eventually get in.   Jenn also discussed how she now felt confident that she would always have a roof over her head, and had plans for the future.  This new sense of efficacy and hope for the future is starkly different from her childhood self, who she described at one point, “feeling like I just wanna get a job, and like exist because, like I just wanna exist.  I don’t wanna do anything, and like what’s the friggin point.”  This childhood memory is not intended to provide evidence that the diagnosis is solely responsible for the change of attitude, but rather, to provide evidence of Jenn’s remarkable journey.   As with Jenn, whose extreme confidence following the assessment had caused her to take on a number of new activities and responsibilities, Max discussed how his new sense of confidence had prompted him to do and achieve more.  He said, “That pedal is to the metal and we goin’.  No stoppin’, just go.  And ever since that assessment, I have been climbing up to the top of the chart.  I have had obstacles in my way that I have literally moved out of my way.  I have done everything to become more and more successful and will continue to grow.”  Here, Max indicates confidence in his ability to grow and succeed in the future.  He also indicated a high sense of efficacy in his ability to accomplish a number of goals and dreams that he had, 98  including writing a book, making a movie, becoming a motivational speaker, and opening a school for individuals with learning disabilities.   Ren also experienced an extreme sense of self-efficacy related to his area of study.  When speaking of his area of study he said,  So I don’t feel there’s a ceiling.  I don’t feel ever if I was to go and debate something on a system.  It gives me this confidence.  Like, I’m not gonna walk around having a Mensa bracelet or ring, but as I speak or as I talk about it I feel like, “No, I’m built for this.  I wasn’t built for a lot of stuff and I had to suffer through it, but I’m built for this.”    Ren was already pursuing his ambitions of making “the world a better place,” when he received the assessment, and indicated that the assessment was a part of this journey.  So, unlike Max and Jenn, whose hopes and goals for the future shifted as a result of the assessment, Ren indicated that the assessment simply assisted him in pursuing his existing goals.   A major part of the assessment result for Laura was “about possibilities.”  Her sense of efficacy and hope for the future was illustrated when she talked about work.  She said,  I am kind of shifting my job around and looking for different kinds of opportunities and looking, and really thinking about um what it is about my job that I really love to do, and then how to kind of grow that a little bit more, rather than feeling like I have to maybe put up with stuff or kind of stay stuck in stuff because I’m really lucky that somebody is going to at least pay me.   This quote illustrated that Laura may have previously felt trapped in her job, and feeling as though she had to “put up with stuff” (perhaps due to her feeling different/inferior), but that she now felt a sense of confidence in herself, and in turn, her worth as an employee.   99  In addition to feeling a general sense of confidence in their abilities and the future, participants indicated that they felt that they had some control over their ability to overcome obstacles or work around their challenges.  This was especially true for Max, whose positive outlook and confidence in the future remained strong, despite the fact that he continued to suffer a number of setbacks.  At the time of the first interview, he had stopped pursuing his education as he could not afford to continue, and at the time of the second interview, he had suffered an injury that had caused him to stop working until he could receive surgery.  Max explained that he wanted to share with others that,  No matter how many obstacles you have, if you just stick to the truth, believe in yourself, and never give up, you can do it.  And I’m not saying that it’s not challenging, I’m not saying that you’re not gonna sit there with your head in your hands and not be ballin’.  You’re gonna be shedding some tears, you’re gonna get fed up, you’re gonna wanna give up, but you can’t.  You have to look at this and say, “You know what? Am I gonna be defeated or am I gonna rise above?”  It’s as simple as that, and I choose not to ever be defeated. Similarly, Laura felt that the diagnosis allowed her to grow in her job, and said, “and maybe now it’s been a little bit more intentional and a little bit more strategic.”  In talking about her understanding of her weaknesses and her disability, Laura said,  And when you know that that’s exactly what it is, then you can put a plan in place and you can figure out if you need to deal with it, if you want to deal with it and how you want to deal with it.   100  Ren also shared that he can be more strategic with regard to his strengths and weaknesses, which helped him to feel confident in his ability to succeed when he returned to the workforce after completing his degree.  He explained, Like, delegate this, don’t do this, don’t put myself in this kind of misery, you know.  Don’t sit there and try to type things out.  Dictate everything, get somebody to proof read it.  Like now I can cater to all my strengths and excel, and know where my weaknesses are.   Sharon talked about how she appreciated the recommendations and insight into her weaknesses, and said, “So talk about great preparation, like I’ll know what to watch for and how to handle it.  And if I don’t, I know where to go to find those answers.”  Sharon’s quote illustrates one aspect of self-efficacy, the feeling of being prepared to handle challenges.  Sharon also mentioned several times that the diagnosis was “opening up a lot of work.”  Sharon’s statement of the diagnosis opening up a lot of work suggests that she felt that she would need to learn to work in a different way, which would be more difficult than continuing to implement her strategy of just working “a bit harder”.   Similarly, Jenn talked about how the recommendations and assessment results allowed her to feel confident in her ability to improve in areas of weakness.  For example, when speaking of her weakness in math she said, “Even the math things, the simple things, I’m like, “Oh, easy fix” I can watch Khan Academy© videos.”   Jenn’s excerpt indicates that she feels in control of overcoming her weaknesses.  Similarly, Max indicated that he felt more in control of his learning because he could explain to others how he needed to be taught.  He said, “I'm a person who can teach somebody how I learn so that they can teach me to grow and continue to gain knowledge.” 101  Unlike the other participants, who indicated that they felt a sense of control over their learning and ability to succeed, Grace said, “I still feel like I’m not, I hate to use the word ‘control’ but like I kind of don’t feel like I’m in control…like I still feel like [my diagnosis] kind of controls me I guess.”  However, Grace reported that she was working through this with her academic coach, and was coming to terms with the idea that she could apply strategies to allow her to succeed, such as allowing herself more time to complete assignments.   Feeling a sense of choice and responsibility.  Closely linked to their sense of self-efficacy was a sense of responsibility that participants felt with regard to succeeding.  Participants discussed how they understood that they would need to put in more effort than their peers, but with the added effort, they had the ability to do well.  Based on this perception, participants felt that it was their choice as to whether they wanted to put in the additional effort required to succeed.   This sense of responsibility is alluded to by Jenn’s quote related to applying medical school when she noted, “I don’t have an excuse not to; it’s more just a matter of how long it’s going to take me.”  Jenn’s quote suggests a feeling of obligation; now that she is aware that she is capable of succeeding, she does not have an excuse not to do the work required to succeed.  She also indicated a new sense of responsibility when she noted, [The assessment] held me more accountable for my performance in school I think.  Because before it was like, “I’m dumb and I shouldn’t be here,” but then it kind of showed me at the same time, it’s like no, you’re smart, so, you know.  You have to be responsible like everyone else. Jenn’s quote suggests that the diagnosis did not only tell her that she was capable of succeeding, but seemed to make it her duty to do so.  Laura also indicated that she felt a sense of 102  responsibility to do well, but indicated that this responsibility was a life choice that she was making.  She summarized this idea in the following quote:  I guess it, maybe, it was more that I could stop resenting, you know if I was feeling resentful about the amount of work that I was doing, I could stop resenting it, because now I was really making a choice.  You know I could choose to go find other resources, I could choose to get lower marks, I could choose to continue to do the work, you know, what was important to me? Laura went on to say, “It gave me permission to really I guess be totally accountable for my choices.” For Laura, who had a number of family and work responsibilities, the choice to “do the work” was sometimes at odds with her family priorities.  She described an experience where she put her family ahead of a school assignment, but acknowledged that this was her choice to make.  Max also suggested that he felt a sense of responsibility to do well and pursue goals, and indicated that achieving these goals were a choice that he had the ability to make.  He explained, You know you gotta pick and choose your battles, you gotta pick and choose what’s worth it and what’s not worth it, you gotta pick and choose the direction in life that you want to go so that you can get there.  But you can’t diddle doddle, you can sit around, because if you’re like me you have special needs, you have to do it.  Even when there’s no momentum, you have to do it.   Grace’s responses indicated that although she did feel some sense of responsibility to do well, she could also “let things slide” and use the diagnosis as an excuse to justify her actions.  She said, “So in some senses, yes now I’m like okay, okay I can do this.  I can do this, so now I almost feel like empowered to do it, but I also talked about feeling an inner tension between um like perfectionism and letting things slide.”  For Grace, it seemed that the amount of work that 103  she felt that she needed to dedicate for her assignments to meet her standards was overwhelming, so although she felt capable and empowered to do so, it was still a daunting task.   Theme 4: Reflecting on the LD and society.  This broad theme refers to participants’ perceptions of the social implications of the LD label.  This broad theme included two subthemes: Perceiving stigma and disclosure, and Questioning the system.  In relation to the first subtheme, participants discussed the stigma surrounding LDs, and their decision to and experience of disclosing the diagnosis.  The second subtheme refers to participants’ perceptions of the current educational system with regard to the LD label.   Perceiving stigma and disclosure.  All participants discussed their perceptions of stigma surrounding LDs.  For many participants, perceived and anticipated stigma seemed to be as significant and damaging as experienced stigma.  For many, the belief that others would perceive their LD negatively hindered them from seeking the assessment and disclosing their diagnosis to others.  Several participants discussed their understanding of common social stereotypes of LDs.  Grace, in particular, was keenly aware of the societal message that accompanied LDs.  When asked to define her LD, she said, “There are immediately thoughts of: That which is outside of me defines a learning disability.”  Several participants talked about the societal conception that people with LDs were limited, and that their diagnosis was not real.  Grace said, “The language is very like, ‘You are limited, like, you’re different.’”  As was discussed in the subtheme Questioning (Theme 2, Making Sense), it appeared that several participants had mixed feelings about aspects of the diagnosis, which seemed to be linked to common social conceptions of LDs.  Grace seemed to be more influenced by the negative conceptions of LDs than other participants.  She explained that up until recently, she had been “Seeing it and hearing it as a very negative thing,” but discussed her efforts at focusing on the strengths as well as the weaknesses.  As was 104  the case for several participants, Laura’s perceptions of stigma and the implications of having an LD label were influenced by past experiences and the experiences of others.  Laura discussed her experiences with stigma when having to advocate for her son, and explained that some of his teachers did not believe that LDs were real.  She said, “I know that there is a little bit of controversy about you know, are learning disabilities real, or [do] you need some more structure in your life, or you know, you need to learn differently, or whatever?”   Laura’s observation that others did not believe in the diagnosis appeared to influence her perception of her diagnosis, as well as how she expected to be perceived by others.   As was noted in the theme Apprehension of the Assessment (Research Question 1), several participants had their own negative perceptions of learning disabilities prior to their own diagnosis.  For those participants, the common social (mis)understanding of LDs shaped their own conception.  For instance, Ren explained, When I was going in to get assessed you know, I was very hesitant and fearful.  There was a lot of scare around that whole process, just because then I would be faulty right.  But the reality of you know now having it for a while and being aware that it’s completely the opposite.  The more I know myself, the more knowledgeable I become about myself and that allows a sense of control, you know, over my life.   Ren’s excerpt illustrates that his preconceived impression of what it meant to have an LD was not consistent with his experience of the diagnosis.  This sentiment was shared by all participants, who indicated that there was a difference between their understanding of their diagnosis and how they felt society perceived LDs.   Laura discussed her understanding of how LDs are perceived in the social context.  She said, “I think learning disabilities has to be a better understood so that it’s not seen as a problem 105  or it’s not seen as an extra.  You know like it can be a gift too.”  Similarly, Ren discussed how LDs are misunderstood, and explained that he would not disclose his LD if he returned to work, “Because some people may not have a good working understanding of what this kind of a disability and ability combined, how that affects my work.”  For most participants, they could focus on the strengths and positive aspects of their diagnosis; however, they were aware that the diagnosis is misunderstood by society, where there is a focus on the weaknesses.   In addition to feeling that society perceived people with LDs to be limited, participants discussed their impression that disclosing their LD would impose limitations on them.  Laura spoke of how her work dealt with individuals who disclosed disabilities of any sort, saying, “The perception, rightly or wrongly from my end, it says that the department has said ‘Okay we will make sure that you have what you need in this job class, but this is sort of as far as we’re gonna go.’”  Laura shared her concerns that if she disclosed her diagnosis at work, she would not receive opportunities to grow in her job or receive promotions.  Similarly, Sharon, whose sister was diagnosed with an LD in childhood said, “I kind of have experience with people being labelled ‘disabled,’ obviously with my sister's experience, and it does tend to limit your choices.  So, it definitely isn't a great positive to get that distinct label.”  For Sharon, the LD label (and stigma attached to it) was perceived to impose limitations on one’s opportunities for pursuing goals.   Several participants discussed actual experiences of stigma.  Jenn had experienced stigma between the first and second interviews, which had caused her to be less likely to disclose her diagnosis.  She spoke of a clinical instructor, to whom she had given her assessment report, and whom she said had targeted her based on her disability.  She said, “I thought I was going to fail.  She would single me out from everyone.  She would ask me to turn things in earlier than 106  everyone else.  So I was basically showing her where to hit me.”  Although Jenn had initially been open with peers and instructors about her diagnosis, this experience caused her to stop sharing her diagnosis with instructors.   All participants discussed their experiences or decisions to disclose their disability.  Most participants had disclosed only to people who were close to them.  Several participants discussed their hesitancy in disclosing their diagnosis to instructors, indicating that instructors would think that the student was “lazy”, less able, was using the LD as an excuse, or would cause more work for the instructor.  Jenn said, “Like they immediately think that you’re just going to be a problem.  Like it looks as that, like you’re gonna be a problem.  Like you’re gonna be asking for special accommodation.”  Similarly, while struggling through a directed studies course, Laura decided not to disclose to her instructor about her LD, even though it may have helped the instructor understand why she was requiring additional support.  She explained,  And then I thought you know what, she’s gone out of her way to do this, and does she really wanna hear that right now?  Or does she wanna hear about the positive impact that she’s making, and does she wanna see results? Jenn and Ren discussed their decision not to disclose their diagnosis on applications for medical and law school, respectively.  Ren explained,  If I ever applied for an Ivy League or I applied for grants and maybe I didn’t get them, or I didn’t get admitted, I would always in the back of my mind be like, ‘Well is it because of [my LD]?’ Although both Jenn and Ren were aware that their applications could not be legally dismissed on the basis of their LD, they did not believe that their diagnosis would not influence their success in being admitted.  Participants expressed a desire to disclose their diagnoses to 107  their supervisors and instructors, respectively, but were uncertain of the response that they would receive.  Laura said, In the long term, it would be ideal for me to be able to be in a space where I can comfortably walk into my boss’s office or my prof’s office and say, “This is my situation, these are the strategies I have in place to work around that, this is what I need from you.  It’s not going to cost you any money, but you know you should know about this.”  So that you know we can have sort of a kinder, gentler kind of place to be in.   Laura explained that she did not quite feel that it was safe in her work environment to disclose her diagnosis, although she discussed the possibility of disclosing in the future.  Sharon expressed a hesitancy to disclose her diagnosis to friends.  She said, “I would say in my social circle, I wouldn't always disclose, ‘cause I've heard a bit of negative.  In our social circle was a little bit of a discussion, ‘Yeah, learning disabilities,’ rolling their eyes.” Several participants had experienced negative responses after deciding to disclose.  As previously discussed, Jenn had experienced stigma after having disclosed her diagnosis to instructors, and was therefore more hesitant to disclose in the future.  Sharon, Grace, and Ren explained that their parents were surprised at their diagnosis.  Of her family’s reaction, Sharon said, “Gob-smacked is the word; ‘I’m Gob-smacked!’ I got that one.”  Both Grace and Ren wondered if their parents experienced some guilt at hearing of the diagnosis, which would explain their reaction to the diagnosis.  Grace said, “I think she was a bit in shock.  I think she thought that, as a mother, she should have picked up on something.” Despite having experienced stigma, Max reported that he never hid his diagnosis, and was adamant about the importance of disclosure.  He said,  108  When you’re about to start hiding things like that you’re not being authentic, so you’re not actually being you, and you lose all confidence, ‘cause you’re looking for a mask to hide behind and what happens when those masks have to come off?   Several participants talked about how experiences of stigma negatively impacted their self-concept.  Max, who was told by a co-worker that he should be “grateful to even have a job” due to his LD said, “How dare you gut me like a fish and leave me flopping on the side of the road, when I am just as skilled at things as anybody else.”  Max’s powerful use of imagery here illuminates the potential emotional damage that stigma can cause.  Similarly, Jenn illustrated the impact of stigma on her self-concept when she said,  It’s like, you know, you put on an outfit.  It’s a little whacky, but you’re like, “I look good.  I like it.” And then you go down the street and you’re like, “I’m feeling good.” And then you start to get bad looks from people.  It’s exhausting having to keep your ego in check and not let people’s glances and opinions start to affect you.   This excerpt from Jenn’s transcript captures the conflict that many participants felt; although they experience validation and an increase in feelings of self-efficacy from their diagnosis, they continue to be influenced by their perceptions of others’ judgment and misunderstanding.  All participants discussed their involvement in this study as a means to increase societal understanding of LDs, decrease stigma, and help others with LDs.  Several participants talked about efforts and desires to increase knowledge of LDs and decrease stigma in different ways.  For instance, Ren discussed sharing information with his sons’ friends, and Max spoke of his many avenues to increase knowledge of LDs.  Grace had spent a lot of time discussing the implications of labels with other friends who had LDs, and was learning about the impact of labels in her university course on disability and justice.  Grace also spoke of her 109  involvement with a university project that aimed to support students’ with disabilities in their university practical experiences.  She became emotional when she recounted her experience at one of the project meetings.  She said,  My role there wasn’t very big, but at the end of the meeting, I kind of did speak up and I talked about that language, even in this meeting, talking about the student being limited and all these things…and so, in this meeting…I’m like weeping in front of them saying that, “Please, like talk about how they can be excited that they have a student with a disability instead of like, ‘Oh my gosh we have a student with a disability, how are we gonna manage?’” Grace’s excerpt suggests that, despite the good intentions of the people with whom she was speaking, Grace felt stigmatized.  This excerpt leads into the following and final subtheme that will be discussed: Questioning the system.   Questioning the system.  All participants expressed some level of doubt about the educational system.  Jenn described the educational system as, “this game that I don’t even really subscribe to.”  It seemed that Jenn felt forced to “play the game” in order to get her degree, but generally seemed dissatisfied with the rules of the game.  She explained, “So it’s interesting because I almost feel like I just have to play the game that the rest of, you know, the general population plays, until I’m done school.”  Jenn’s excerpts indicate that she felt trapped; if she wanted to reach her goals, she needed to follow the rules set by the educational system to achieve them.   Several participants questioned whether the current educational system set up to accommodate for learning differences.  Grace said,   110  It seems to me like our educational system and our university system really only caters to one kind of learner, and so if we’re not being told there are other ways then if you can’t measure up in this one way then for your whole life you feel like you, you either just struggle and barely make it through or you don’t make it through and then that says so much, like that can transfer over into, like, identity.   Similarly, Sharon questioned the standard requirements.  She said, “Maybe there shouldn’t be that one set pre-requisite to get into certain programs or one set mark for things.  Or an accommodation or an alternative class.”  Sharon’s excerpt reflects a sentiment shared by other participants: the idea that there were concrete ideas that would improve the experience of the education system for individuals with LDs.   Grace and Laura questioned the value and use of intelligence testing in the educational system.  Grace seemed conflicted; although it was validating for her to find out that her intelligence was average or above average, she seemed to experience some guilt to have felt validated.  She said,  I still feel weird about the whole intelligence index thing.  Like, I happen to be average or above average in whatever the area is that they’re testing in.  But what if someone else is below in an area?  That doesn’t mean that they’re less of a person.   In this quote, Grace was questioning of the value placed on intelligence by society.  It seemed that Grace felt an internal sense of conflict about whether she should really feel validated by having an intelligence that was “average or above average.”   Her quote suggested that she felt that feeling validated by her intelligence implied judgement against others who had intelligence levels lower than hers.   111  Laura discussed a common criterion for providing support in some educational systems, which is the requirement that there is a discrepancy of a certain degree between one’s cognitive and academic functioning.  She said,   I didn’t realize that if your IQ was below a certain rate that you wouldn’t get support, and you only get support if there’s a gap.  And so to me that’s crazy making.  Especially if that support can set you up to thrive.  So, to me, that’s systemic. Max placed great value on the worth of an education.  However, he expressed a great deal of frustration related to his understanding of how individuals with disabilities are perceived by the education system.  He said,  Should I ever have the opportunity to ever be in that much power, I guarantee you this would never be happening under my control.  Everybody would be considered a human being and everybody would have equal rights because this knocking people around, labeling, dismissing, hurting, bullying: I have a zero tolerance for it. For Max, it seemed that his past experiences have strongly influenced his perception of the education system.   Summary This chapter reviewed the themes that arose from participants’ interview data.  These themes were organized with reference to the two research questions.  In reference to the first research question, participants described their experiences prior to the assessment and of seeking the assessment, in addition to their perceptions of the clinician and difficulties understanding the results of the assessment.  Four broad themes and five subthemes were identified.  The second research question explored participants’ experiences of receiving a diagnosis of an LD.  Four broad themes and 11 subthemes were identified.  The following chapter will review the findings 112  of this study within the context of existing literature.  In addition, the limitations of this study, implications for practice, and recommendations for future research will be discussed.   113  Chapter V: DISCUSSION The purpose of this study was to explore adults’ experiences of participating in a psychoeducational assessment and of receiving a diagnosis of an LD.  Semi-structured interviews were conducted individually with six adults who had each received a psychoeducational assessment that resulted in a diagnosis of an LD.  Four females and two males took part in this study, and were from 25 to 49 years of age at the time of their assessment and diagnosis.  All participants were assessed and diagnosed at the same assessment clinic on a large university campus in western Canada.  Participants had received their LD diagnoses from one to four years prior to the initial interview.  All participants were pursuing educational goals at the time of the assessment, but the nature of their educational goals differed.  For instance, Max was pursuing his grade 12 education, whereas Laura was in her fourth year of her Bachelor’s degree.  Interview transcripts were analyzed using a qualitative approach, IPA.  Interpretative phenomenological analysis allows for an in-depth analysis of the phenomenon of interest, while respecting the convergences and divergences between participants (J. A. Smith et al., 2009).  In response to the first research question (What are adults’ experiences of participating in the psychoeducational assessment process?), four broad themes and five subthemes were identified: 1) Reviewing the past, 2) Pursuing the assessment, 3) Perceptions of the clinician, and 4) Understanding the results.  In response to the second research question (What are adults’ experiences of receiving a diagnosis of an LD?), four broad themes and 11 subthemes were identified: 1) Gaining insight and perspective on the past, 2) Making sense, 3) Conceptualizing a new self, and 4) Reflecting on the LD and society.  This chapter will discuss the findings of this study with reference to the broader cultural context and existing literature, will identify the limitations of this study, and implications for research and practice.   114  Discussion of the Findings within a Model of Educational Labeling   The findings of this study can be interpreted within the LINK (Label Induced Knowledge) model of educational labeling, proposed by Lo (2014).  This model focuses on the act of labelling within the education system.  Lo proposes that the experience of receiving an educational label (e.g., gifted, disabled) requires an individual to reconcile his or her personal (implicit) theory of a particular label with his or her understanding of expert theories.  This model proposes that the labelling event (in this case, receiving the diagnosis of an LD) leads to short-term emotional reaction.  This event causes an individual to engage in a recursive theory-generating process, in which the individual gradually forms a theory of self-knowledge.  This theory-generating process was described and witnessed within this study, as participants described the questions and actions that they had taken in an attempt to make sense of the diagnosis.     Particularly relevant to this study is Lo’s proposition that the formation of one’s personal theory of a label is influenced by personal and contextual factors.   Personal factors include intrapersonal intelligence, abstract thinking ability, sensitivity to social norms, and prior knowledge.  Contextual factors include the influence of family members and professionals, one’s social setting, and more distal sociocultural factors. Participants’ responses highlighted the importance of prior knowledge of LDs and sensitivity to norms in one’s experience of seeking the psychoeducational assessment and of receiving an LD diagnosis.  To provide a deeper understanding of these findings, it is useful to discuss the findings of this study within the broader cultural context.  The participants live in a culture in which intelligence and academic achievement is highly valued (Dudley-Marling, 2004; Gregg, 2007).  They expressed that their self-concepts prior to their diagnosis included self-descriptors such as being “different”, “lazy”, 115  and “dumb”.  They reported feeling that they could not meet the educational standards as expected (by themselves and/or parents/teachers).  They also lived in a society in which the diagnosis of an LD is associated with stigma, and is frequently misunderstood (Roper Public Affairs & Corporate Communications, 2010).  The influence of the cultural perception of LDs was evident throughout the interviews, even when not discussed directly.  The sociocultural influence of stigma and the value of intelligence and academic achievement was apparent when participants discussed their apprehension of the assessment.  Participants described their fear and worry with regard to the assessment based on their preconceptions of what a diagnosis of an LD would mean, in addition to the possibility of the results showing that they were not intelligent.  Despite the apprehension that all participants experienced, the experience of receiving the diagnosis was discussed in mostly positive terms, as it provided participants with validation and insight into themselves.  Thus, participants’ preconceptions of what the results might mean and their actual experience of receiving the diagnosis were at odds.  Participants appeared to be influenced by common misconceptions of the LD label when they were trying to make sense of the diagnosis, which caused them to engage in some reflection and questioning of the diagnosis.    Armed with this new information about themselves, participants engaged in a process of making sense of the diagnosis and of themselves with the diagnosis.  Common societal perceptions of the LD as being an excuse or “not real” led several participants to question the meaning and implications of the diagnosis.  Sensitivity to social norms was illustrated further as participants described their thoughts on disclosing the diagnosis to friends, family members, instructors, and employers.  Several participants described negative experiences of disclosure.  Many participants indicated that they would only disclose the diagnosis if they thought it would be helpful to others who may also be struggling with similar concerns.   116  Lo (2014) also emphasizes the recursive, cyclical nature of the development of one’s implicit theory of self-knowledge.  Lo notes that an individual’s personal theory of his or her label is continually evolving over time.  As they attempted to understand the LD label, participants in the current study described engaging in research and questioning of their diagnosis.  Participants also indicated a desire and/or a sense of hesitancy to attempt to learn more about the meaning of their diagnosis.  There was an indication that participants had learned as much as they needed to know regarding their diagnosis to get by in their current environment, but would revisit and revise their understanding of the diagnosis in the future.  Prior studies related to receiving a diagnosis in adulthood have discussed concepts such as acceptance and reconciliation, indicating that there is a final stage of ‘being’ that occurs after one has come to accept their diagnosis.  Unlike these prior studies, the findings of the current study indicate a recursive process that aligns with Lo’s (2014) LINK model; personal understanding and definitions of one’s diagnosis evolves over time and in response to contextual factors.  As one encounters different experiences and information, their personal understanding of their diagnosis may change.        The LINK model provides a useful framework for the findings of this study.  Particularly useful is the emphasis the model places on one’s task of making sense of a label within the context of one’s environment.  In addition, the role of a person’s pre-existing understanding of the label, as well as one’s sensitivity to social norms were seen to be important factors in how the participants in this study made sense of their diagnosis.          Discussion of the Findings with Reference to Existing Literature Understanding the experiences of seeking and receiving a psychoeducational assessment and a diagnosis of an LD from the perspectives of adults can provide valuable insight to 117  researchers and practitioners.  Given the lack of research in this area, a qualitative approach is valuable, as it can provide a rich, in-depth understanding of participants’ experiences. The findings of this study can contribute to our understanding of adults with LDs, and can provide us with additional understanding of what it means to receive this diagnosis in adulthood.  The findings of this study will be discussed below with reference to relevant literature.   Research Question 1: Experiences of Seeking and Receiving a Psychoeducational Assessment The goal of the first research question was to explore adults’ experiences of seeking and receiving a psychoeducational assessment.  There is little research that has specifically examined this phenomenon.  It was noted in analyzing the data that participants had little to say about the assessment process itself, which was interpreted to indicate that the process of being assessed lacked significance for the participants, in comparison to the experiences prior to and following the assessment.  These experiences are discussed in the themes below.     Reviewing the past.  All participants described background experiences, self-concepts, and messages that they had received from others that were related to their life prior to the diagnosis.  Although the aim of this study was not to investigate participants’ experiences of living with an undiagnosed LD, it became clear that participants felt that this information was relevant to their experiences of seeking and receiving an assessment and diagnosis of an LD.  Participants described having always felt different or inferior to their peers, explaining their perceptions of themselves, using adjectives like “stupid”, “dumb”, “lazy”, and/or “weird”.  In addition, participants explained that they felt that they were to blame for their academic failings.  These feelings were often influenced or perpetuated by messages that participants received from 118  those around them, particularly parents and teachers.  These feelings and messages from others persisted into adulthood in educational and work settings.   These findings are consistent with prior research of various samples, including individuals who were diagnosed with LD in childhood (describing experiences prior to their diagnosis; Higgins et al., 2002; McNulty, 2003), similar populations of adults who were diagnosed with LDs in adulthood (Orenstein, 1992), and adults diagnosed with ADHD (Young et al., 2007) and Asperger’s (Punshon et al., 2009).  These prior studies have indicated that, prior to their diagnosis, individuals felt different or inferior to peers, and felt misunderstood or unsupported from those around them.  The consistency of these findings across multiple samples provides evidence that these thoughts and experiences may be common across many individuals with an undiagnosed disorder that is typically associated with childhood.   Pursuing the assessment.  Research of the experience of receiving a diagnosis of a disorder that is typically associated with childhood has generally examined life prior to the assessment, and experiences following the diagnosis, without discussing experiences of seeking and receiving the assessment itself.  The findings of the current study are unique in that they provide insight into the context of participants’ journey to the assessment, and illustrate the range of emotions that participants experience while seeking and receiving the assessment.  Only Orenstein (1992) and Fleischmann and Miller (2013) discussed participants’ experiences of first hearing the definition of the disorder, which led them to seek an assessment. The findings of this study provide us with unique insight into what brought participants to seek the assessment, and their perceptions of their experiences of doing so.  Participants’ pursuit of their assessment was interpreted within the context of a larger journey, which included the pursuit of educational and career related goals.  For many, these journeys were presented within their larger life story, in 119  which their pursuit of educational goals marked a directional change in their life from a difficult past to a more hopeful future.  This subtheme provides a unique contribution to the literature, demonstrating an important element of how participants make sense of their experiences seeking an assessment.     Participants also communicated their perceptions of the role of others in their pursuit of the assessment.  Most participants described a positive experience of having an individual suggest the diagnosis or assessment to them.  These findings are consistent with prior studies by Orenstein (1992) and Fleischmann and Miller (2013), who discussed participants’ experiences of first hearing the definition of the disorder.  These studies both present the experience of hearing of the disorder as a pivotal moment.  Unlike findings from previous studies, several participants in the current study discussed the discouragement they received from others when they were seeking an assessment, indicating that others thought the assessment was not necessary or that the diagnosis was not real.  This finding highlights one possible barrier to seeking an assessment, and the existing stigma related to seeking assessment and diagnosis.    The findings also provide insight into participants’ emotional experiences of seeking a diagnosis.  Participants described feeling a mix of emotions, including apprehension and excitement when seeking the assessment.  The excitement that some participants experienced was consistent with prior research, which has indicated that individuals look forward to gaining a deeper understanding about their difficulties (Denhart, 2008).   The apprehension that many participants described was a novel contribution of this study.  For some, their preconceived notions of what the implications and meaning of an LD, which was influenced by stigma and misunderstanding of the diagnosis, caused them to be apprehensive.  Others described feeling hopeful about receiving a diagnosis, but apprehensive that they would not get the answers that 120  they were seeking.  Several participants described the temptation to avoid the assessment altogether.  It was interpreted that participants believed that the assessment would either confirm or disprove their past understanding of themselves, and there was an overall sense of vulnerability to the assessment process.  Despite feelings of apprehension, several participants conveyed a sense of commitment to the assessment process.  Overall, these findings provided insight into adults’ experiences of pursuing the assessment.  Participants’ pursuit of the assessment was interpreted to fit within a larger self-awareness journey, and these unique findings highlighted the mixed emotions that individuals may experience when seeking an assessment. The role of contextual factors and prior conceptions of the LD label was interpreted to influence participants’ pursuit of the assessment.            Perceptions of the clinician.  The findings of this study indicated that the clinician could be perceived as having a positive or negative influence on participants’ experience of the assessment.  In the current study, several participants noted the positive connection that they felt with the clinician, which positively influenced their overall experience.  These participants indicated that the clinicians treated them with respect, and participants felt that they were working toward the same goal.  On the other hand, one participant’s experience was negatively influenced by the clinician’s perceived lack of experience, in addition to the clinician’s neglect to focus on the participant’s strengths.  These findings are consistent with the findings from one study, which indicated that psychologists’ perceived engagement and competence influenced parents’ satisfaction with their child’s assessment and feedback meeting (Merkel, 2010).  In this theme, participants’ responses indicated that they appreciated a clinician who was respectful and collaborative with them as clients.  A clinician’s perceived inexperience had a negative impact on one participant’s experience.   These findings provide a unique contribution to this research, 121  indicating that clinicians can be perceived as a positive or negative element of their assessment experience.  These findings will be discussed in further detail with regard to implications for practice.     Understanding the results.  There is lack of research that has examined adult clients’ perceptions of receiving psychoeducational assessment results.  However, findings from the current study align with previous findings regarding parents’ reported difficulty understanding their child’s psychoeducational assessment results (Harvey, 2006; Merkel, 2010; Zake & Wendt, 1991).  This body of literature has indicated that language skills, education level, and socioeconomic status are related to parents’ understanding of assessment results.  Like parents, the adult participants in the current study found the results of the assessment difficult to understand.  Participants described feeling overwhelmed by the amount and complexity of information that they received in the feedback meeting.  Participant responses suggested that during the meeting, they were not only trying to understand the complex information, but also understand what the information meant to them in their daily lives.  For some participants, the clinician was seen to help or hinder their understanding of the results. These findings suggest that additional research is required to provide clinicians with further direction on how to help clients understand the results of their assessment.          Research Question 2.  Making Sense of the Diagnosis The aim of the second research question was to gain insight into participants’ lived experiences of receiving a diagnosis of an LD.  There were many consistencies between the findings of this study and previous research on adults receiving an LD diagnosis (Kong, 2012; Orenstein, 1992).  Several differences are apparent, which relate primarily to the lack of resentment and negative reactions expressed by the participants in the current sample.  For 122  example, whereas Kong (2012) reported that participants’ negative self-concept was reinforced by the diagnosis, the participants in this study indicated feelings of validation and expressed little anger or resentment.  The findings from the current study will be discussed with relation to the existing literature in more detail in the following sections.    Gaining insight and perspective on the past.   Previous research of adults who have received diagnoses of LDs, ADHD, and Asperger’s (McNulty, 2003; Orenstein, 1992; Punshon et al., 2009; Young et al., 2007) has indicated that these diagnoses have provided participants with a new framework from which to examine their past.  Previously held beliefs and experiences can be re-evaluated with the new information provided by the diagnosis.  Findings from this study aligned with this previous research.  Specifically, adults indicated that the LD diagnosis to give them insight into a hidden part of themselves, as well as a new perspective on their past.  Participants could use the information to evaluate the accuracy of their previous understanding of themselves (e.g., “I’m dumb/lazy”) and messages that they had received from others.  This finding represented a significant aspect of the diagnosis for the participants of this study. Previous research has also indicated that adults who have recently received a diagnosis of an LD, ADHD, or Asperger’s experience feelings of relief upon learning or their diagnosis (Kong, 2012; Orenstein, 1992; Punshon et al., 2009; Young et al., 2007).  A salient finding of this study was the validation provided by the diagnosis.  The LD diagnosis provided participants with evidence that they were “okay” and that their difficulties were not due to their own lack of effort.  These feelings were central to their experience of receiving an LD diagnosis, and were discussed in more detail than any negative reactions that the participants may have experienced.  In addition to providing the participants with insight and validation, participants conveyed a 123  sense of compassion and empathy for their past selves. Participants could feel pride in their accomplishments that they had achieved despite their difficulties, and also discussed the role of the diagnosis in helping them to forgive painful pasts. This finding was unique to this study; although prior research has highlighted the role of a diagnosis in providing individuals with perspective on the past, research has not yet discussed the sense of compassion that the participants in this study discussed.    Unlike previous research in this area (Kong, 2012; Orenstein, 1992; Young et al., 2007), participants in the current study did not express anger or resentment for not having received a diagnosis earlier.  Rather, participants communicated a sense of respect, ownership, and compassion for their past stories.  There was also a degree of understanding reported regarding parent and teacher misperceptions.  Prior research also noted feelings of grief, depression, and self-doubt following the diagnosis (Kong, 2012; Orenstein, 1992).   These findings indicate that the learning disability diagnosis provided participants with a new framework with which to understand themselves.  This new information provided them with insight into a part of themselves to which they did not otherwise have access, with validation, and with a new perspective on their past understandings of themselves.  Although there were some feelings of confusion and questioning regarding the meaning of the diagnosis (discussed in the following section), most participants in this study described the experience of receiving the diagnosis as a positive experience overall.   Making sense.  Previous research has proposed that individuals pass through several stages of acceptance of a diagnosis.  Higgins and colleagues (2002) interviewed adults who had been diagnosed with an LD 20 years prior to their study.  They proposed that, after receiving the diagnosis, participants engaged in the task of understanding the extent and impact of the 124  diagnosis.  This broad theme aligns with this stage proposed by Higgins and colleagues (2002).  Specifically, this broad theme indicated that all participants attempted to better understand the diagnosis and what it meant to their self-concepts and their day-to-day lives.  Participants tried to learn more about their diagnosis through research, reflection, and discussion with others. This finding seems to be tied to the difficulty participants had understanding the results.  It seemed that participants felt the need to explore and understand the meaning of the diagnosis, so that they could understand what the diagnosis meant to their sense of identity and their lives.  Two participants also noted that although they were interested in learning more about the diagnosis, they were also hesitant to think too much about it.  Their apprehension of learning more about the diagnosis was similar to the initial apprehension that participants experienced in seeking the diagnosis.  There was a worry that the information that they would find would be overwhelming, and might have a negative impact.  Participants’ also discussed the role of the diagnosis in providing them with an opportunity to better understand themselves.  Some participants described this process in terms of an “identity crisis,” which caused them to question their identity.  This process was significant for many of the participants, and seemed to be a process that they returned to over time, rather than a stage that was passed through in a sequence of acceptance.   As participants made sense of their diagnosis, they discussed some questions and feelings of conflict surrounding the meaning of the diagnosis.  These questions and feelings of conflict were in contrast to the feelings of validation, insight, confidence, and self-efficacy that were described in relation to the diagnosis. These experiences were more significant for some participants than others.  It is posited that participants struggled to make sense of the difference between their positive, validating impression of the diagnosis in comparison to their 125  preconceptions and societal messages that they received in relation to the diagnosis.  Several participants appeared to be struggling more than others with making sense of the diagnosis, whereas others seemed to be more at ease with the meaning of the diagnosis.  This finding aligns with some research on experiences of receiving a diagnosis of ADHD or an LD (Kong, 2012; Young et al., 2007), which has indicated that some individuals have negative reactions to the diagnosis, including confusion and emotional turmoil, whereas others have more positive reactions.  In particular, the participants in Kong’s (2012) study indicated that they experienced feelings of distress and self-doubt after receiving the diagnosis.  As with several participants in the current study, Kong indicated that adults wondered about the diagnosis acting as a self-fulfilling prophecy.  That is, participants wondered whether they would perform more poorly on academic tasks due to the psychological impact of the diagnosis.  However, unlike previous research, the positive aspects of the diagnosis overshadowed these experiences.  That is, while other findings emphasized the emotional turmoil and self-doubt that resulted from the diagnosis (Kong, 2012; Orenstein, 1992; Young et al., 2007), these doubts were interpreted to be secondary to the positive aspects of the diagnosis.   This broad theme refers to the process that participants described as they made sense of their diagnosis.  Participants attempted to understand more about the diagnosis, as well as how the diagnosis related to their sense of self.  Participants also described feelings of inner conflict with regard to the meaning of the diagnosis.  This process of sense-making was not interpreted to be something that ended, but rather, something to which participants returned over time.     Conceptualizing a new self.  The analyses revealed that participants had incorporated aspects of their diagnosis into their self-concept.  For many, their understanding of their strengths and weaknesses had shifted, such that they no longer viewed their weaknesses as a personal 126  reflection of themselves.  Participants indicated that they felt confident in their ability to succeed in meeting certain goals, and were able to use strategies to overcome or minimize the impact of their weaknesses.  Participants also discussed their new sense of being able to make a choice to do well, and the sense of responsibility that they felt to do so.   Prior research on the experience of receiving a diagnosis of LD in adulthood has been mixed with regard to the overall message of the diagnosis.  For instance, Orenstein (1992) discusses the “ongoing process of accepting that they have lived with an undiagnosed LD” as a core theme for her participants.  Although Kong (2012) also discussed feelings of distress, self-doubt, embarrassment, and frustration, she also noted feelings of confidence and motivation.  The findings from the current study indicated that participants’ understanding of themselves was more positive after their diagnosis.     The diagnosis also appeared to provide participants with self-awareness and had reframed their strength and difficulties, which has been indicated to be critical to success for adults with LDs (Goldberg et al., 2003; Raskind, Goldberg, Higgins, & Herman, 1999; Reiff, 2004).  For instance, participants who had once defined themselves as being “dumb,” “weird,” or “lazy,” now perceived themselves to be intelligent, studious, and hard-working.  They emphasized their strengths and minimized their weaknesses.  They defined their LD as a difference in learning, which was attributed to a brain-based (rather than personality or character-based) issue.  This finding aligns with Higgins’ and colleagues (2002) final two stages of acceptance of the LD diagnosis: seeing the diagnosis as just one part of oneself, and recognizing the positive impact of the diagnosis.   Awareness and reframing of one’s LD has been perceived to be of such importance that it has formed the basis of several interventions aimed to increase well-being and success for individuals with LDs (Reiff, 2004).     127   In addition, participants in this study indicated that the diagnosis allowed them to feel a sense of confidence and control over their lives, specifically with regard to their ability to succeed in academic and educational pursuits, and to overcome obstacles.  Participants shared their belief that it was within their ability to choose whether they would succeed in particular tasks, and the sense of responsibility that they felt to succeed.  It seemed that their awareness and understanding of their diagnosis allowed them to view their academic difficulties as specific obstacles that could be overcome through hard work and/or setting up strategies for success (e.g., taking additional time, delegating or sharing challenging tasks with others).  Taken together, these themes indicated that participants demonstrated characteristics of ways of thinking that have been indicated to be important markers of success for adults with LDs: self-awareness, reframing, and self-determination (Gerber et al., 1992; Reiff et al., 1997).  Specifically, participants demonstrated an understanding of their strengths and difficulties, viewed their difficulties as something they could work around or overcome, and felt motivated and capable to meet their goals.  These findings may not be surprising, given that five of the six participants were attending postsecondary school at the time of the assessment, indicating a level of success prior to the assessment.  Somewhat more surprising is the story of Max, who had encountered many obstacles, but continued to strive toward ambitious goals.  These findings align with previous studies of individuals’ experiences of receiving an LD diagnosis, which have indicated increased feelings of motivation, and feelings of control, responsibility, and choice with relation to future challenges (Kong, 2012). The findings of the current study may be compared to experiences of individuals who grow up with a diagnosed LD.  These findings are mixed, but there is a great deal of research indicating that children with diagnosed LDs have poorer academic and general self-concept (but 128  not social self-concept) than children without LD (Burden, 2008; Zeleke, 2004).  In McNulty’s (2003) qualitative study, he explored the experiences of adults who were diagnosed with LD in childhood.  The participants in McNulty’s study struggled poor self-esteem and with feeling misunderstood and unsupported, despite their diagnosis.  Participants continued to suffer from poor self-esteem and self-consciousness into adulthood.  Burden (2008) has suggested that the timing of diagnosis and the manner in which the diagnosis is explained to the individual is critical in its acceptance and in the self-concepts of children with LDs.  However, it is unclear as of yet whether self-concept is different for individuals with a diagnosed LD from individuals with an undiagnosed LD.  Further research is needed to understand the relation between diagnosis (and timing of the diagnosis) on self-concept. This broad theme indicated that participants had incorporated positive aspects of their diagnosis into their sense of self, which allowed them to feel confident in their ability to set and reach their goals, as well as a sense of responsibility to be successful in meeting goals.  These findings indicate that the diagnosis increased participants’ self-determination, an important factor related to success for adults with LDs, offering a unique contribution to the literature.  It is possible that adults’ involvement and investment in their own assessment allows them to understand the meaning of the diagnosis, letting them understand their strengths and weaknesses.  This deeper understanding may assist adults in setting more appropriate goals, and feeling determined to reach those goals.        Reflecting on the LD and society.  It has been suggested that individuals with hidden disabilities tend to internalize stereotypes about their disability (Chaudoir & Quinn, 2010; Quinn & Chaudoir, 2009).  Participants’ responses in this study were interpreted to indicate that they had internalized the stereotypes about LDs, and the influence of stigma related to LDs was 129  present throughout the findings of this study.  For instance, participants’ preconceptions of LDs, influenced by societal understanding, can be seen in their apprehension of the diagnosis.  In addition, participants’ questions and doubt surrounding the diagnosis appeared to be heavily influenced by societal implications of LDs.   The findings of the current study are consistent with prior research, which has revealed that adults with LDs who were diagnosed in childhood and adulthood perceive themselves to be stigmatized (Denhart, 2008; Kong, 2012; Shessel & Reiff, 1999). Participants in the current study directly discussed concepts such as stigma, the meaning of the LD label, decisions and experiences of disclosing their diagnosis, and of the perceptions and treatment of LDs within the educational system.  Participants were aware of common stereotypes of LDs and discussed their beliefs that LDs were not well understood by most people.  As with other studies, the fear of stigma prevented participants from disclosing their diagnosis to others and requesting accommodations (Gerber & Price, 2012; Gerber et al., 2004).  Prior research has indicated that many individuals with a hidden disability, including not only LDs but also chronic health conditions, anticipate experiencing stigma from those around them.   This anticipation of stigma can prevent individuals from disclosing the disability to others (Chaudoir & Quinn, 2010; Quinn & Chaudoir, 2009).  Anticipated stigma is negatively related to self-esteem, psychological distress and physical health (Chaudoir & Quinn, 2010; Quinn & Chaudoir, 2009).   In addition to anticipating stigma, research has demonstrated that individuals with LDs face actual stigma and misunderstanding from others (May & Stone, 2010a; Roper Public Affairs & Corporate Communications, 2010).  Stereotypes of LDs include believing that LDs are not real, but rather a sign of laziness or low intelligence.  Students who request accommodations in postsecondary courses are often perceived to be cheating or using unfair advantages by their non-130  disabled peers and instructors (Denhart, 2008; Field et al., 2003).  Although several participants discussed actual experiences of stigma, anticipated stigma seemed to be just as powerful for the participants of this study.  Another unique contribution of this study was participants’ dissatisfaction with the educational system and its ability to cater to individuals with LDs.  Research suggests that despite effort, institutions may not successfully prepare youth for postsecondary education, or support adult students when they arrive (Gregg, 2007).   The influence of societal implications of the LD label was seen throughout the interviews with participants, even when not directly the subject of discussion.  This theme discussed participants’ perceptions of the stigma surrounding the LD label, as well as the related educational implications.  Participants discussed a desire to live in a society in which the label could be disclosed without fear of prejudice or hindrance in their academic/employment settings.  Implications for Psychologists, Educators, and Policy Makers The intention of this study was to explore the experiences of a group of individuals who had shared a similar experience.  By using IPA, the findings of this study are not intended to be generalizable, but it is possible to make tentative recommendations that may be applicable to a broader group than those involved in this study.  One of the unique contributions to the literature from this study was the role of the clinician in participants’ experiences of the assessment. The findings of this study may have implications for the professionals who assess and support adults who seek and receive a diagnosis of an LD.   First, participants indicated that they appreciated clinicians who treated them with respect and made them feel as though the assessment was a collaborative effort between the clinicians and the clients.  It is important for clinicians to treat their clients as equal partners in the assessment process, and be engaging.  With regard to the psychoeducational assessment, it is 131  important for clinicians to keep in mind that adults come to the assessment with past experiences and knowledge, which may influence their expectations and emotional state when they begin the assessment.  They may feel apprehensive about the implications of the assessment, and of what the assessment results might mean.  Learning about clients’ background history and reasons for pursuing an assessment, and understanding that clients may be experiencing a range of mixed emotions may help clinicians to address clients concerns and expectations of the assessment.  Clinicians can support clients by allowing them time to ask questions, raise their concerns, and by responding to them with empathy and clarity.  It is also important for clinicians to recognize that they may influence their clients’ experiences of the assessment.  The findings from this study indicate that clinicians may wish to focus on making the client feel comfortable and respected throughout the assessment process.  Clinicians may wish to emphasize to their clients that they are working together towards a joint goal.  The findings of this study indicate that there is a need for the results of psychoeducational assessment to be explained to clients in a clear, concise manner.  Although research has not directly studied adults’ understanding of their own psychoeducational assessment results, research has indicated that graphs can be especially useful in parents’ comprehension of their child’s assessment results.  Parents’ understanding of written reports is also improved when written reports limit the number of technical terms, include behavioural terms to describe strengths and weaknesses, and include comprehensive descriptions of treatment recommendations (Merkel, 2010; Wiener & Kohler, 1986).  Recognizing that clients may feel overwhelmed and confused during the assessment feedback session, and providing multiple checks for understanding may also assist clinicians in promoting client comprehension.  Given that the participants in this study took time to do further research regarding LDs following the 132  assessment, it may be useful for clinicians and other professionals to provide these adults with accessible, reliable resources to assist them in gaining further information.   The findings of this study indicate that the diagnosis of an LD provides adults with insight into themselves and provides them with a new perspective on their past.  Given the significant role of the results, and the complexity of the information provided, clinicians may wish to follow-up with clients to provide clients with an additional opportunity to learn about their assessment results, after they have had some time to make sense of the results.  Adults with a recent LD diagnosis may develop a new sense of self, which provides them with feelings of confidence and responsibility.  Clients may have a self-concept that is at odds with the information that is provided by the assessment.  This prior self-concept, combined with general complexity of assessment results, highlights the importance of helping clients to understand the results of the assessment.  It may be important for clinicians and other professionals working with adults with a recent LD diagnosis (e.g., disability advisors, counselors) to provide these adults with a supportive, open environment in which adults can engage in their sense-making process.  Disability services in the community and at postsecondary institutions can support adults’ in the process of making sense of their diagnosis by providing psychoeducational workshops about LDs, by providing counselling services, facilitating support groups, and by helping adults with LDs to connect with each other.   Furthermore, psychologists and disability service professionals can provide psychoeducational workshops to professors, employers, and the larger community, in order to reduce stigma associated with LDs.  Finally, the findings of this study provide further evidence that adults with LDs are aware of the societal implications of having a label such as an LD.  Participants discussed encountering stigma.  They were faced with the decision of whether to disclose their diagnosis, fearing that 133  their diagnosis might be held against them.  There is evidence that LDs are generally misunderstood in society (Roper Public Affairs & Corporate Communications, 2010).  The inconsistency in the definition over time and lack of consensus among professionals (Fletcher, 2012) likely contributes to this misunderstanding.  Findings from this study demonstrate the misunderstanding of LDs.  For instance, one participant’s postsecondary disability advisor could not understand why one participant would want the LD diagnosis, since she already received support for her ADHD diagnosis.  Even when a professional explained their LDs to them, participants in this study were still confused.  It seems that reducing this misunderstanding of the diagnosis would be one way to reduce the stigma associated with it.  The stigma associated with LDs hindered the participants from seeking the assessment in the first place, and prevented them from disclosing their diagnosis to others and seeking support.  They seemed to interfere with several participants’ feelings of validation that arose from the diagnosis.  One of the primary goals of an assessment and diagnosis, from a professional perspective, is to provide individuals with resources and access to support for their learning difficulties (Gregg et al., 2006; Lo, 2014).  If stigma is preventing adults from accessing support, the primary professional goal of the assessment may not be met.  It is hoped that the findings of this study inform policy development with regard to providing adults with an environment in which they feel safe to disclose their diagnosis in order to receive support and access accommodations.   Limitations and Strengths of the Current Study The current study provides unique contributions to our understanding of a scarcely researched population.  However, this study is not without its limitations.  First, the researcher chose not to review participants’ psychoeducational assessment reports.  This decision was made with the aim of getting as close to the participants’ experiences as possible and reducing possible 134  sources of bias.  By not reviewing the results, however, it was not possible to confirm the type or severity of the LD.  Rather, the researcher had to rely on participants’ accounts of their diagnoses.  Future research could include this information or use an additional researcher to gather this information, to reduce the potential bias of the primary researcher. participants had little to say about their experiences of the assessment itself, which was reflected in the results of the first research question.  Although this may be a reflection of the difference between the researcher’s expectations and the participants’ experiences, it is possible that the research methods (such as recruitment letter, flyer, and interview protocol) influenced participants’ responses.   Another potential limitation of this study was that all participants were assessed at the same assessment clinic.  This factor may limit the theoretical transferability of the findings of this study.  However, this recruitment method also allowed some level of control over the method of assessment, as the clinic holds regular calibration sessions for all clinicians, and assessments are supervised by experienced psychologists.   Third, five of the six participants identified as Caucasian, and four of the six participants were female.  Although the findings of this study are not intended to be generalized across settings and populations, these demographic characteristics have additional implications for the theoretical transferability of the findings.  In a similar vein, all participants in this study had academic ambitions at the time of their assessment, and five of the six participants were attending postsecondary education at the time of their assessment.    Finally, as participant recruitment was not random, it is possible that the individuals who chose to participate in this study were those who experienced the assessment and diagnosis of their LD in a different way than individuals who did not respond to recruitment efforts.  For 135  instance, it is possible that the participants in the current study experienced the psychoeducational assessment and diagnosis as more meaningful than individuals who did not participate.  Additional studies may include larger, more representative samples and recruit participants who were assessed in different assessment settings.   This study has many strengths.  The findings of this study offer findings that align with prior research, in addition to offering unique contributions.  This study examined the experiences of a unique population, of which there has been little prior research.  In fact, a review of the research literature found only one peer-reviewed research article (Kong, 2012) and one doctoral dissertation (Orenstein, 1992).  This study gave this understudied population a means by which to share their experiences and perspectives.  Unlike other research approaches, which focus only on similarities among the sample, the IPA approach also highlighted the divergences among participant responses.  This approach ensured that each participant was given a voice to communicate his or her experiences.  This study included participants with a variety of academic impairments (e.g., reading, writing, and mathematics), in addition to other diagnoses, such as giftedness and ADHD.  Some participants described difficult or traumatic pasts, whereas others did not.  Although all participants were pursuing academic goals, these goals ranged from completing a high school diploma to acceptance into medical school.  The participants ranged in age from 25 to 49 years of age.  Despite these differences among participants, there were a number of striking similarities in their responses, which were grouped into themes.  Finally, this study employed a number of strategies to increase the quality and rigor of this study.             Recommendations for Future Research There is a great deal of future research to be conducted in this area, given the lack of existing research on this population.  The findings from this study suggest several lines of 136  research that invite further exploration.   First, a follow-up study that includes a larger sample size and include participants from different educational backgrounds is needed.  Second, further investigation into the barriers and facilitators of adults’ pursuit of the psychoeducational assessment is also warranted.  A study using critical incident technique (CIT; Butterfield, Maglio, Borgen, & Amundson, 2009) could be useful in highlighting factors that help and hinder adults’ decision to pursue and actual pursuit of the psychoeducational assessment.   Third, research should investigate factors that facilitate adults’ understanding of the assessment results.  Several adults in this study indicated significant difficulty understanding the results of their assessment, and indicated that the clinician had a role in their understanding of the results.  Practitioners have little research-based guidance with regard to how to most effectively communicate (in written and verbal form) the results and the implications of the diagnosis to adult clients.  Research has indicated that psychoeducational assessment reports are often written at a postsecondary reading level.  Given that adults with learning disabilities may have significant reading difficulties, it is important that research examine ways in which assessment results can be clearly and accurately communicated to clients.  Research could investigate the impact of different methods of writing reports on client understanding, such as including summaries, writing shorter reports, or including graphs in reports.    Conclusion The current study sought to understand adults’ experiences of seeking and receiving a psychoeducational assessment and receiving a diagnosis of an LD.  In relation to the first research question regarding adults’ experiences of seeking and receiving a psychoeducational assessment, four broad themes and five subthemes were identified.  These broad themes described adults’ experiences and perceptions of themselves prior to seeking the assessment, 137  experiences seeking the assessment, perceptions of the clinician, and their understanding of the results.  These findings highlight the idea that seeking and receiving a psychoeducational assessment does not occur in a vacuum.  Adults come to an assessment with a range of experiences, perceptions, and expectations.  These findings shed light on the important role of the clinician throughout this process.  Participants described appreciating a clinician who was respectful, and who approached the assessment in collaboration with the client.     In relation to the second research question, regarding adults’ experiences of receiving an LD diagnosis, four broad themes and 11 subthemes were identified.  These findings indicated that making sense of the diagnosis is an iterative process, rather than a series of steps through which individuals pass. Throughout the findings, societal implications of the LD label were interpreted to influence participants as they made sense of their diagnosis.  Participants were challenged to reconcile their prior conceptions of the label with their new understanding of their own diagnosis.  Some participants expressed feelings of inner conflict as they engaged in making sense of the diagnosis.  An additional finding of this study was the role of the diagnosis in increasing participants’ feelings of self-determination.  The findings of this study contribute to and expand upon previous research in the area of adults’ experiences of seeking and receiving a psychoeducational assessment and of receiving an LD diagnosis.  It is hoped that future research will further examine ways in which practitioners can support these adults through this journey.  138  References Altarac, M., & Saroha, E. (2007). Lifetime prevalence of learning disability among US children. Pediatrics, 119, S77-83. doi: 10.1542/peds.2006-2089L American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). 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Smith (Ed.), Qualitative psychology: A practical guide to research methods, second edition (pp. 53-80). Thousand Oaks, California: SAGE Publications. 150  Smith, M.C., & Pourchot, T. (Eds.). (2011). Adult learning and development: Perspectives from educational psychology. New York: Routledge. Smith, S.R., Wiggins, C.M., & Gorske, T.T. (2007). A survey of psychological assessment feedback practices. Assessment, 14, 310-319. doi: 10.1177/1073191107302842 Sparks, R.L., & Lovett, B.J. (2009). Objective criteria for classification of postsecondary students as learning disabled effects on prevalence rates and group characteristics. Journal of Learning Disabilities, 42, 230-239. doi: 10.1177/0022219408331040 Sulkowski, M.L., & Joyce, D.J. (2012). School psychology goes to college: The emerging role of school psychology in college communities. Psychology in the Schools, 49, 809-815. doi: 10.1002/pits.21634 Swanson, H.L., Harris, K.R., & Graham, S. (Eds.). (2013). Handbook of learning disabilities (Vol. 2). New York: Guilford Press. Tharinger, D.J., Finn, S.E., Hersh, B., Wilkinson, A., Christopher, G.B., & Tran, A. (2008). Assessment feedback with parents and preadolescent children: A collaborative approach. Professional Psychology: Research and Practice, 39, 600-609. doi: 10.1037/0735-7028.39.6.600 Todorova, I. (2011). Explorations with interpretative phenomenological analysis in different socio-cultural contexts: Commentary on J. Smith:‘Evaluating the contribution of interpretative phenomenological analysis’. Health Psychology Review, 5, 34-38. doi: 10.1080/17437199.2010.520115 Tze, V.M.C., Johnston, L., & Kelm, J.L. (2014). The growth of the adult assessment clinic: What do we know? What can we do next? Paper presented at the Canadian Psychological Association, Vancouver, BC.  151  Wiener, J., & Kohler, S. (1986). Parents' comprehension of psychological reports. Psychology in the Schools, 23, 265-270. doi: 10.1002/1520-6807(198607)23:3<265::AID-PITS2310230307>3.0.CO;2-Q Wilson, A.M., Armstrong, C.D., Furrie, A., & Walcot, E. (2009). The mental health of canadians with self-reported learning disabilities. Journal of Learning Disabilities, 42, 24-40. doi: 10.1177/0022219408326216 Yardley, L. (2008). Demonstrating validity in qualitative psychology. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (Vol. 2, pp. 235-251). London: Sage Publications. Young, S., Bramham, J., Gray, K., & Rose, E. (2007). The experience of receiving a diagnosis and treatment of ADHD in adulthood: A qualitative study of clinically referred patients using interpretative phenomenological analysis. Journal of Attention Disorders, 11, 493-503. doi: 10.1037/0735-7028.39.6.600 Zake, J., & Wendt, R.N. (1991). Parental anxiety, language, assertion, and expectation factors in subseqent understanding and recall of assessment information. Psychology in the Schools, 28, 156-164. doi: 10.1002/1520-6807(199104)28:2<156::AID-PITS2310280210> Zeleke, S. (2004). Self‐concepts of students with learning disabilities and their normally achieving peers: A review. European Journal of Special Needs Education, 19, 145-170. doi: 10.1080/08856250410001678469  152  Appendix A: Recruitment Flyer    153  Appendix B: Letter of Initial Contact  T H E    U N I V E R S I T Y    O F   B R I T I S H    C O L U M B I A  Faculty of Education Department of Educational and Counselling Psychology, and Special Education 2125 Main Mall Vancouver, B.C. Canada V6T 1Z4 604-822-1364 Tel 604-822-9097 Fax  We are writing to invite you to take part in a research project.  This letter is being sent to you because you were a client at the Adult Assessment Clinic at the University of British Columbia. The purpose of this study will be to explore your experiences and the meaning of the psychoeducational assessment, and the meaning of the diagnosis of a learning disability to you and your daily life.  This research is being conducted as part of the requirements for a doctoral degree.  Please review the recruitment flyer below for more details of the study.   Your participation in this study is entirely voluntary and will not affect any relationships or services with UBC or the Adult Assessment Clinic. If you choose to take part in this study, you will also have the right to withdraw at any time without any repercussions. Participation would consist of the following: November/December, 2014  A 60 minute interview at the Adult Assessment Clinic regarding the psychoeducational assessment and how you made sense of receiving a diagnosis of a learning disability.  March/April, 2015   A follow-up 30 minute interview (can be done over the phone) to clarify issues.  A follow-up email to comment on the findings.   154  We respect your right to privacy and thus will take measures to ensure confidentiality of the information shared. All the information collected as part of this study will be kept confidential. No individual information will be shared with other clinicians at the Adult Assessment Clinic, and you will not be identified by name in any reports related to this project. If you would like to learn more about this study and what is involved, or if you would like to take part in the study, please contact the Co-Investigator, Joanna Kelm, at (xxx)xxx-xxxx or via email at xxxxx@gmail.com.  Following your indication of interest, we will contact you to schedule an interview for a time that works with your schedule. If at any time you have concerns or questions about your participation in this study or your rights as a research participant, you may contact the Research Subject Information Line in the UBC Office of Research Services at the University of British Columbia at (604) 822-8598. Sincerely, ___________________________    Dr. Barbara Holmes                       Co-Director, Adult Assessment Clinic Psychoeducational Research and Training Centre     Phone: (xxx)xxx-xxxx   Email: xxxxx@interchange.ubc.ca  On Behalf of the Study Investigators: ___________________________    ___________________________ Dr. William McKee, Principal Investigator                      Joanna Kelm, Co-Investigator Dept of Educational and Counselling    Dept of Educational and Counselling  Psychology and Special Education    Psychology and Special Education  Phone: (xxx)xxx-xxxx     Phone(xxx)xxx-xxxx Email: xxxxx@ubc.ca      Email: xxxxx@gmail.com   155   ___________________________    ___________________________ Dr. Brian O’Neill, Co-Investigator      Dr. Lynn Miller, Co-Investigator                    School of Social Work     Dept of Educational and Counselling   Phone: (xxx)xxx-xxxx     Psychology and Special Education Email: xxxxx@ubc.ca       Phone: (xxx)xxx-xxxx          Email: xxxxx@ubc.ca     156   Appendix C: Screening Questions Adult Assessment Study Screening questions  Participant ID Number: ________ Initials:___________ Gender:___________ Age:  ___________ Date:   ____________  A psychoeducational assessment is a process in which a variety of information, including interviews, questionnaires, and different types of tests, are used to understand an individual’s strengths and weaknesses, and can be used to give evidence of a diagnosis such as a learning disability.  The psychoeducational assessment typically begins with an interview and consent form, and concludes with a final feedback meeting with the client.    1. Does the above definition fit with your experience?     Y/N 2. When did you receive your psychoeducational assessment? 3. How old were you when the assessment took place? 4. Where was the assessment conducted? 5. By whom was the assessment conducted (e.g., a Registered Psychologist? Certified School Psychologist?) 6. Were you given a diagnosis?  Y/N a. If yes, what was the diagnosis: ____________ 7. Were you a student at the time of the assessment?    157  Appendix D: Consent Form T H E    U N I V E R S I T Y    O F   B R I T I S H    C O L U M B I A  Faculty of Education Department of Educational and Counselling Psychology, and Special Education 2125 Main Mall Vancouver, B.C.  Canada V6T 1Z4 604-822-1364 Tel 604-822-9097 Fax  Consent Form   Principal Investigator:  Dr.  William McKee UBC Faculty of Education,  Department of Educational and Counselling Psychology, and Special Education (ECPS) Phone: (xxx)xxx-xxxx Email: xxxxx@ubc.ca  Co-investigators: Joanna Kelm, MA, Doctoral student UBC Faculty of Education Department of Educational and Counselling Psychology, and Special Education (ECPS) Phone: (xxx)xxx-xxxx Email: xxxxx@gmail.com  Dr.  Brian O’Neill UBC School of Social Work Phone: (xxx)xxx-xxxx Email: xxxxx@ubc.ca  Dr.  Lynn D.  Miller UBC Faculty of Education Department of Educational and Counselling Psychology, and Special Education (ECPS) Phone: (xxx)xxx-xxxx Email: xxxxx@ubc.ca   What is the Purpose of the Study? The purpose of this study will be to explore your experiences of receiving a psychoeducational assessment that resulted in a diagnosis of a learning disability in adulthood.   158  You are being invited to take part in this research because you have recently received a psychoeducational assessment and were diagnosed with a learning disability.  This research is being conducted as part of the requirements for a doctoral degree.    Research Study Participation:  1. Participating in this projects means that you agree to take part in this study by completing an interview about your experiences of seeking and receiving a psychoeducational assessment and a diagnosis of a learning disability. These interviews would be completed during the months of November and December. The interview would take approximately 60 minutes to complete and would be scheduled at your convenience. 2. Topics to be discussed include: Your experience of seeking and receiving a psychoeducational assessment for the first time, your experience at the final feedback meeting, and what the diagnosis of a learning disability meant for you.   3. You may decline to answer any questions.   4. The interview will be recorded and transcribed by a typist.  5. You may be invited to follow-up interview of approximately 30 minutes to clarify issues and comment on the findings. 6. Your participation is strictly confidential; only the primary investigator and co-investigator will have access to the responses collected. Answers will not be individually identified to the public, or Adult Assessment Clinicians, and all documents will be identified only by code number.  All information documents will be kept in a locked lab and password-protected computer files at the office of the Principal Investigator.  7. If at any time you have any concerns about your treatment or rights as a research participant, you may contact the Research Subject Information Line in the Office of Research Services at UBC at (604) 822-8598. 8. Your participation in this study is entirely voluntary, and you may or they may refuse to participate or withdraw from the study at any time without any repercussions. Potential Risks It is possible that talking about the experiences related to being diagnosed with a learning disability could be distressing.  A list of supportive resources will be provided to you should you need for follow-up support to deal with issues that arose during the interview.  Potential Benefits The knowledge gained in this study may help practitioners and community organizations become more responsive to the needs of adults receiving psychoeducational assessments.   If you have any question or concerns, please contact the Co-Investigator, Joanna Kelm, at (xxx)xxx-xxxx.  If you choose to participate, please sign and return one copy to the interviewer at your first meeting. Keep the other copy for your records.  159  Your signature below indicates that you consent to participate in this study and you have received a copy of this consent form (pages 1-2) for your own records.  Participant’s Name (please print):       __________________________ Participant’s Signature (please sign):  __________________________ Date:                                                    __________________________    160    Appendix E: Demographic Information Participant ID Number: ________ Initials:___________ Gender:___________ Age: ____________ Date:   ____________   1. What is your current education level (circle): a. Some college/university b. College diploma/certificate c. Bachelors Degree d. Graduate Degree e. Other:___________ 2. Are you currently (circle): a. Employed (full-time/part-time) i. Please describe type of work: b. Unemployed/Disability c. Student (full-time/part-time) i. Area of study: d. Other:__________ 3. What best describes your current marital status: a. Single b. Married/common-law c. Separated/Divorced d. Other:________ 4. What best describes your living situation: a. Live alone b. Live with roommate c. Live with significant other d. Live with parents 161  Appendix F: Interview Protocol  T H E    U N I V E R S I T Y    O F   B R I T I S H    C O L U M B I A  Adult Assessment Clinic Psychoeducational Research and Training Centre, Faculty of Education 2125 Main Mall Vancouver, B.C.  Canada V6T 1Z4 604-822-1364 Tel 604-822-9097 Fax  Interview Protocol Participant ID:  Date:  Interview start time:  Interview end time:   1. Tell me about your experience of receiving a psychoeducational assessment.  (What did the assessment mean to you? What was the most striking aspect of the experience?) 2. What brought you to seek an assessment? (What made you take action?) 3. How did you feel about your difficulties before the assessment? (What did you think was the reason behind your difficulties?  Did you/your family/teachers ever try to do something about your difficulties?) 4. What were your expectations of the experience? (What outcome were you expecting?) 5. Tell me about the experience of the final feedback meeting with the clinician.  (What were you feeling during this meeting? What did this meeting mean to you?  How did it feel when the clinician explained the results to you?) 6. What does the diagnosis mean to you? (How do you feel about the diagnosis? How did you process the diagnosis?  Did the diagnosis fit with your feelings of your difficulties?)   162  7. Have your feelings about the diagnosis changed over time? 8. What were the implications of the diagnosis on your daily life? 9. What does having a learning disability mean to your family and community? 10. Can you tell me how the diagnosis of a learning disability fits in with how you see yourself in the future?    163  Appendix G: List of Supportive Services List of Supportive Services Counseling Services Offering Services at a Low Cost or Sliding Scale Fees Based on Income   Oak Counselling Services Society 949 W. 49th Ave.,  Vancouver, BC 604-266-5611   Family Services of Greater Vancouver 1616 W. 7th Ave., Vancouver, BC 604-731-4951   Stewart and Associates 227-1118 Homer St. Vancouver, BC 604-687-7171  Learning Disabilities Support   Adult Learning Development Association (ALDA) 608-409 Granville St.,  Vancouver, BC 604-683-5554    Book: Understanding Dyslexia and other Learning Disabilities by Linda Siegel http://www.amazon.ca/Understanding-Dyslexia-other-Learning-Disabilities/dp/1926966295   Website: National Center for Learning Disabilities: Learning Disabilities in Adulthood http://www.ncld.org/adults-learning-disabilities/living-disability-tips/learning-disabilities-adulthood    Social media community for youth & adults with learning disabilities: https://www.facebook.com/LuminousMindsProject  For XXXX students:   Access and Diversity 1874 East Mall, Brock Hall University of British Columbia, Vancouver, BC 604-822-5844  164  Appendix H: Follow-up Interview Protocol  T H E    U N I V E R S I T Y    O F   B R I T I S H    C O L U M B I A  Adult Assessment Clinic Psychoeducational Research and Training Centre, Faculty of Education 2125 Main Mall Vancouver, B.C.  Canada V6T 1Z4 604-822-1364 Tel 604-822-9097 Fax  Follow-Up Interview Protocol Participant ID:  Date:  Gender:  Ethnicity:  Interview start time:  Interview end time:    1) Does this summary include any information that I may have misunderstood?  2) After having some time to think about the first interview, is there anything you would like to add?  If relevant: 3) Can you tell me more about ___________? 4) Can you clarify what you meant by ________?      165  Appendix I: Email for Member Checks Dear [participant name],  Thank you  again for participating in our study.    I am writing to ask for your feedback on the themes that were identified through my interviews with participants.  I have attached a brief summary of the themes that will be included in the final research document.     I am asking you to read the attached theme descriptions and comment if they seem to “fit” with your experience.  It is not expected that all themes will fit for you or represent you completely.    You are also invited, if you would prefer, to discuss this information over the phone.  I am more than happy to describe the themes to you and ask for your feedback verbally.  Please let me know what you would prefer.   Please carefully read the attached tables of themes, then reply to this email with Yes/NO and if No provide a written comment on the following:   1)      Do the themes make sense to you? Yes / No               Comment:       2)      Do the themes capture your experience?  Yes /  No               Comment:        3)      Are you surprised by any of the categories?  Yes /  No               Comment:   166  Appendix J: Attachment for Member Checks RESEARCH QUESTION 1: EXPERIENCES OF SEEKING AND RECEIVING AN ASSESSMENT *Broad themes refer to overarching themes, which sometimes brought together similar, connected themes (subthemes).  Each broad theme and subtheme is listed below (bold) with a short description (italics). Broad themes* Subthemes R1 Theme 1: Background: Reviewing the past - This theme refers to participants’ perceptions of their experiences of living with an undiagnosed LD.   Feeling different/inferior - Participants’ experiences growing up, feeling dumb /weird/different/inadequate Experiencing a lack of understanding/support from others - Messages that participants received from others that they were less intelligent/lazy/could do better if they tried harder.  R1 Theme 2: Experiences Seeking the Assessment - This broad theme represents participants’ experiences that led them to seek the assessment, and of seeking the assessment.  The assessment as part of a journey - Participants described already being on a journey of pursuing educational and/or career-related goals when the decided to seek the assessment Outside voices - Participants described experiences in which they felt supported or unsupported from others when they were seeking support and answers for their academic difficulties. Apprehension and anticipation  - Participants described a variety of emotions related to seeking the assessment.  Primarily, participants felt nervous about what the results of the assessment would reveal.   R 1 Theme 3: Perceptions of the Clinician - Refers to participants’ positive and negative perceptions of the impact of the assessor/clinician on their experience of the assessment. [No subtheme]       R 1 Theme 4: Understanding the Results - Refers to participants’ difficulty understanding the results of the assessment during the final feedback meeting. [No subtheme]    167  RESEARCH QUESTION 2: EXPERIENCES OF RECEIVING A DIAGNOSIS *Broad themes refer to overarching themes, which sometimes brought together similar, connected themes (subthemes).  Each broad theme and subtheme is listed below (bold) with a short description (italics). Broad Themes* Subthemes R 2 Theme 1: Insight and Perspective on the Past - This theme refers to the role of the diagnosis in providing participants with insight into themselves and their past, specifically with regard to their cognitive and academic capabilities  Insight into hidden self - Participants felt that the assessment results gave them insight into a hidden part of themselves. Validation - Participants received validation from the diagnosis that they were okay/smart and/or their difficulties were not due to laziness/lack of effort. Compassion for past self - The results allowed participants to have a sense of sympathy and understanding for their past selves.   R 2 Theme 2: Making Sense - This theme refers to a process of adjustment and sense-making that was described by participants.   Digging deeper: Exploring the meaning of the diagnosis - Participants discussed different ways in which they explored the meaning of their diagnosis, including through research, seeking support, and engaging with others with LDs.   An unravelling of self: The diagnosis and the self. - Most participants indicated that they needed to spend time reconsidering their identity, as the diagnosis offered new information that was different from participants’ prior understanding of themselves.   Questioning - This subtheme represents participants’ feelings of questioning, confusion, and conflict that arose due to the diagnosis.  Some participants shared lingering doubts and questions about their diagnosis.    R 2 theme 3: The New Self - Refers to participants’ new understanding of themselves with the diagnosis.   Self-concept - Participants were at different stages of identifying with and incorporating the diagnosis into their understanding of themselves; however, all participants indicated that they had incorporated at least some aspect of the diagnosis into their self-concept, such as being intelligent, or hard-working.  This theme also included participants’ understanding of their learning difference, which included two elements. The first was that they need to learn differently than others, and the second was that the LD was due to a difference in brain functioning.   Self-efficacy - Most participants indicated that they felt a sense of confidence in their ability to accomplish academic and work-related tasks, and indicated that they could envision future possibilities.   168  Choice and a sense of responsibility - Participants discussed how they felt that it was their choice as to whether they wanted to put in the additional effort required to succeed.  Several participants felt a sense of responsibility to do well.     R 2 Theme 4: The LD and Society - This broad theme refers to participants’ perceptions of the social implications of the LD label.  Stigma and disclosure - All participants discussed their perceptions of stigma surrounding LDs.  For many participants, perceived stigma seemed to be as significant and damaging as experienced stigma.  In many cases, the fear of stigma or misunderstanding stopped participants from disclosing their diagnosis.  Questioning the system - This theme reflects participants’ doubt or criticism of the educational system.   

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