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- Herausgeber: John Wiley & Sons
- Kategorie: Bildung
- Sprache: Englisch
A definitive and evidence-based guide for psychologists, teachers, coaches, HR personnel and all professionals who must understand and work with dyslexic adults.
- The only book to look at dyslexia within the context of life span developmental psychology, including the factors that contribute to success - now fully revised and updated
- Combines an accessible style with a strong focus on evidence-based practice and a sound theoretical model on which to base assessment, counselling, teaching and training
- Provides a clear guide to the kinds of assessment that can be conducted and the ways in which dyslexic adults can be supported in selection, training, education and employment
- Includes coverage of overlapping syndromes such as dyspraxia and dyscalculia, and up-to-date check lists for syndromes that can be used as part of the assessment process
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Veröffentlichungsjahr: 2013
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Contents
Cover
Title Page
Copyright
Dedication
Preface to the Second Edition
Preface to the First Edition
Acknowledgements
Prologue
Chapter 1: Dyslexia in the Adult Years
Introduction
History
Terminology
Defining Dyslexia
Evidence-based Practice
The Nature of Dyslexia: Behavioural Characteristics
Observable Behavioural Characteristics
Affective Characteristics
Positive Characteristics
Behavioural Characteristics: Empirical Evidence
Explaining Characteristics
Biology and Neurology
Cognition
Dyslexia: A Working Memory Model
Explaining Positive Characteristics
Explaining Affective Characteristics
A Working Definition
Dyslexia and Other Syndromes
Dyspraxia
Dyscalculia
Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder
Asperger’s Syndrome
Visual Stress
Degrees of Dyslexia
The Prevalence of Dyslexia
Summary
Chapter 2: Interventions
Introduction
Psychological Development in the Adult Years
Transitions
Successful Adjustment
Learning in Adulthood
Types of Intervention
The Role of the Tutor/Coach
The Development of Metacognitive Skills
Skill Development, Compensation and Accommodation: An Integrated Framework for Development
Alternative Interventions
Summary
Chapter 3: Identification and Assessment
Introduction
Information Gathering
Interviews
Screening
Checklists
Computer-based Tests
Individually Administered Tests
Formal Diagnosis
Testing Intelligence
WAIS-IV
Abbreviated Scales
Tests for Teachers
Further Psychological Testing
Memory Ability
Executive Functioning
Achievements in Literacy and Numeracy
The Components of a Reading Assessment
Decoding
Comprehension
Listening Comprehension
Speed of Reading
The Assessment of Metacognition in Reading
The Assessment of Reading Skills and Information Technology
Writing and Spelling
Numeracy
Measuring Affective Characteristics
Self-Esteem
Anxiety
Re-assessment
Diagnosis and English as an Additional Language
Diagnosis and Other Syndromes
Pretending to Have a Learning Difficulty
Feedback to Client
Report Writing
Summary
1. Report of Assessment
Summary
Introduction
2. Diagnostic Evaluation
Appendix A: Sample Report
Appendix B: A Guide through the Maze of Assessments
Chapter 4: Counselling
Introduction
Aims of Counselling
Issues in Counselling Dyslexic People
Approaches to Counselling
Couple Counselling
Referring On
Summary
Chapter 5: Personal Development
Introduction
Self-understanding
The Nature of the Difficulty
Interpreting Dyslexia
Abilities and Strengths
Metacognition
The Importance of Metacognition to Learning and Working
A Metacognitive Technique
Issues in Personal Development
A Dyslexic Person’s Perspective
A Case History – C
Summary
Chapter 6: Literacy for Living
Introduction
Lifelong Learning
Planning a Programme
Information Processing and Literacy
Improving Levels of Literacy
Improving Reading Accuracy
Improving Reading Comprehension
Improving Spelling
Improving Writing
Improving Quantative Literacy
A Dyslexic Person’s Perspective
Coaches Comment
Summary
Chapter 7: Academic and Professional Learning Skills
Introduction
The Keys to Success in Higher and Professional Education
The Importance of Metacognition
Self-understanding and Self-reflection
Self Reflection Attribution and Self Efficacy
Learning and Working Styles
Cognitive Learning Differences
Behavioural Learning Styles
Time Management
Organisation of Work
Reading
Critical Reading Skills
Comprehending Diagrammatic and Tabular Formats
Essay Writing
Proofreading
Grammar and Punctuation
Spelling
Listening Comprehension
Note Taking
Note Making
Revision and Memory Skills
Examinations
Statistics
Presentations
Working in a Group
Tutorials
The Keys to Success
The Responsibilities of Colleges and Universities
Study Skills Course Outline
A Dyslexic Person’s Perspective
Sample Assessment Report
Summary
Section 1
Assessment
Cognitive Processing
Attainments in Literacy
Conclusion
Section 2
Literacy Skills
Written Work
Recommendations for Adjustments in Assessment Settings
Assessment Results – Page Format
Appendix 1 – Extended reporting of WRIT scores
Summary
Chapter 8: Career Development and Guidance
Introduction
Approaches to Counselling and Development
Career Guidance: A Decision Making Model
Career Guidance and the Dyslexic: A Model
Case Example
Career Development
A Dyslexic’s Perspective: Dyslexia and Journalism
Summary
Chapter 9: Dyslexia At Work
Introduction
The Whole Organisation: Awareness Training
Disclosure: To Tell or Not To Tell
Goodness of Fit
Recruitment and Selection
The Workplace Assessment/Consultation
The Manager’s Role
Challenges Facing Dyslexic People
Metacognitive Skills at Work
Transfer of Skills
Evaluation and Reflection
Changes and Transitions at Work
Support in the Workplace
Programme Length
Mentoring
Addressing Challenges
Organisation
Memory
Reading at Work
Specific Visual Difficulties
Performance Issues
Written Work in the Office
Record Keeping
Report Writing
Numeracy
Proofreading and Checking
Listening Skills at Work
Minute and Note Taking
Meetings
Working in a Team
Interviews
A Note on the Use of Technology
Workplace Consultancy Report
Dyslexia Consultancy Report
Recommendations for Skill Development, IT solutions and Adjustments
A Coaching Course Outline
Initial Consultation
Summary
Chapter 10: Advocacy
Introduction
The Legislative Framework
Reasonable Adjustments
Adjustments in Recruitment, Selection and Promotion
Types of Test Accommodations/Adjustments
Disclosing Dyslexia
Policy and Practice in Employment
Legislation in Education and Training
Policy in Higher Education
Self-Help and Self-Help Groups
Dyslexia and Criminal Law
Summary
Epilogue
Appendix A: Sample Interview Schedule
Appendix B: Useful Contact Addresses
The British Dyslexia Association
European Dyslexia Association
The International Dyslexia Association
Learning Disabilities Association of America
Dyslexia Foundation of New Zealand
Australian Dyslexia Association
Assessment and Coaching
References
Index
This edition first published 2013 by the British Psychological Society and John Wiley & Sons, Ltd. © 2013 John Wiley & Sons, Ltd
Edition history: Whurr Publishers Ltd. (1e, 2002)
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Library of Congress Cataloging-in-Publication Data
McLoughlin, David, 1948– The dyslexic adult : interventions and outcomes : an evidence-based approach / David McLoughlin, Carol Leather. – Second edition, revised and expanded. p. cm. First edition, London : Whurr, 2002. Includes bibliographical references and index. ISBN 978-1-119-97394-2 (cloth : alk. paper) – ISBN 978-1-119-97393-5 (pbk. : alk. paper) 1. Dyslexia. 2. Dyslexics. I. Leather, Carol. RC394.W6M43 2012 616.85′53–dc23 2012045249
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To our families – who matter most
Preface to the Second Edition
There has been an international move in the health professions towards evidence-based practice. Our commitment to this is reflected in the amended title. Nevertheless, the first edition of this book was published in 2002, so most of the research cited and the theoretical perspectives were based on work conducted prior to that date. The past decade has seen an increasing interest in dyslexia as it affects adults, with a consequent rise in the amount of research devoted to its impact in training, education and employment. We have, therefore, perceived a need for a second edition and have revised and added to the original book, to reflect developments in the scientific understanding of dyslexia in assessment methodologies and changing practice in education, the workplace and legal settings.
We have again placed dyslexia in the context of life span development, as it is at times of the normal transitions in life that it becomes most evident. Moving from one level of education to the next, entering the work force, undergoing professional education and being promoted all present dyslexic people with new challenges to which they do not adapt automatically. It is at those times that effective interventions are most important, but too much of the existing literature fails to address this, the assumption being that once an individual has learned a skill or strategy the problem being addressed will disappear. Further, although practice has improved, there is still too much generalisation of interventions adopted by those working with children to adulthood.
Evidence for good practice should be current and relevant. Wherever possible we have relied on primary sources published within the past decade, but have also drawn inferences from these for broader areas of functioning to underpin our recommendations for assessment, counselling, coaching, training and teaching. In so doing we hope that we contribute to improved practice, thereby rewarding all those dyslexic people from whom we have learned so much and who have enriched our professional lives.
David McLoughlin and Carol Leather
Preface to the First Edition
In 1993 we established the Adult Dyslexia and Skills Development Centre in response to a perceived need to provide a specialist service for dyslexic adults. We believed that they needed to be treated as a distinct group and that a particular approach is required to assessment, counselling, teaching and training. Since opening the Centre thousands of people have come through our doors. There has been an increased interest in dyslexia during the adult years. Practice has improved but there are still those who ‘get it wrong’, including ourselves. This book is an opportunity to pass on to others what we think we have learned. We have addressed conceptual issues and relied on evidence from systematic studies but, in the main, we have relied on our experience of working with dyslexic people on a daily basis.
Scientific research continues to focus on certain aspects of dyslexia but fails to provide a complete picture. We are constantly impressed by our clients’ experiences; the anguish they have endured, the fortitude they have shown, their persistence and determination.
We have taken a lifespan approach as dyslexia is much more than an educational matter. Dyslexic people will seek advice from medical practitioners, counsellors, human resource specialists, teachers, tutors, their employers and volunteers. We hope that we have dealt with the important issues in such a way as to be of help to all these groups, and therefore to dyslexic people themselves. As we have aimed at a wide audience a number of the chapters have been written with ‘selective readers’ in mind. There is, therefore, a certain amount of repetition as the same solutions apply in different settings.
Acknowledgements
Our thanks to Kellie Bolger for her invaluable assistance in preparing the manuscript.
We would also like to express our gratitude to the Trustees of Independent Dyslexia Consultants Carol May and Trevor Hobbs, who give their time freely to help us keep on track, and especially to Pat Stringer who has been a loyal and supportive colleague, as well as friend for more than twenty years, and who contributed to the first edition of this book.
Prologue
Professionals who wish to develop an understanding of learning and performance difficulties and their manifestation in personal, social and work settings must develop an understanding of their impact on the lives of real people. In doing so, it will become evident that even apparently mild problems can have considerable impact on employment, education, relationships and daily living (Getzel and Gergerty, 1996).
While preparing the first edition of this book we wrote to our clients, both former and current, asking them if they could comment either verbally or in writing on their experience of being dyslexic. Some of their responses, as well comments from more recent clients, are recorded throughout the text. The ensuing is from a former client and is reproduced in its entirety as it encapsulates the journey too many dyslexic people have to undertake before gaining contentment in their lives.
The earliest memory I have of the impact of being dyslexic was when I was about seven. My teacher asked the class to write a story about an imaginary land. I remember writing this really long and imaginary story, no holds barred. I put all that I could into it. I handed it in and eagerly awaited its return. The teacher’s reaction to something that I was so proud of was not what I had expected. She was really annoyed, she said I had put no effect into it and it was a terrible piece of work. She was blind to the substance, for she could only see the structure. I would take nearly twenty years before I would be so bold as to write so freely.
The next major impact dyslexia had on my life was when I was fourteen, I had to be assessed for my reading and writing. This was to see if I should be aloud to remain in the main stream and work towards my exams. The assessment was some what of a narrow-minded affair, I had to read and then spell, lists of words. An approach that is hardly the best way to determine any ones ability, let alone a dyslexic. In the real world of a classroom, I had long since employed methods and techniques, to enhance my ability, so evident in my successes in my other subjects. But based on this elaborate test I was informed that I had the reading age of a seven-year-old and I was not going to be put forward.
The head of English conclusions were clear. I was stupid, dim, a waste of time. The Education system fails a lot of people it a production line unable or unwilling to accommodate anyone who can’t keep up. But it was its willingness to disregard me so readily and it failure to see beyond my bad English, without taking account of my success in other subject, was how it failed for me. This failure had such a negative impact on me. My school, may not have heard of dyslexia or worse chose not to, But that gave them no excuse and me no defence.
My biology teacher who could see my potential did succeed in changing the schools minds. She may not of have a better understanding of the problem then anyone else at my school, but she could easily see that I was not stupid nor a waste of time. With her and my mothers support, I left school with enough qualifications to secure an apprenticeship but school and education have proven to be a dreadful and very painful experience. One that would so soon start all over again.
After leaving school my approach to the problem, was to hid it, to avoid any situation where it would be exposed. I became very good at this. Some of my own family were unaware of the full extent of the problem. What else could I do? This approach worked well at first. I did not have to experience the humiliations that I had suffered at school but it came at a cost. I found myself in my mid-twenties, with limited expectations, a poor, dead end job, with no mental stimulation. This approach of hiding in the shadows, never daring to venture out, may have been safe but very limiting.
My teacher was right. I’m not stupid. So by the time I was twenty-five, I was very frustrated and unhappy, something had to change. Around this time I had started to hear about dyslexia and started to use the word about myself. I once told someone that I was dyslexic, who reply was “why don’t you do something about it?” This was a revaluation, it had never dawned on me that I could. It had been such a isolating experience till then. I did not tell anyone, so no one knew and those who had in the past, had acted so negatively. So who was there to help, who was there to understand. The ideal of change scared me but I started to think that maybe something could be done.
The turning point came when I met my future wife. She wanted to go travelling around the world. This would mean I would have to leave my safe little job. It was to be a work holiday so I would have to find work, not long-term but still in another country. On my return home I would also have to find a new job. To put it simply, all the demons were let loose. But just like when I had learnt to drive, something I had put off and put off, then bought a car, so I had to learn. I left my job and went travelling. This was the point of no return. I knew that things would then have to then change. Fear is a very powerful thing but nothing compared to love.
When I come back home, I got a new job in a scientific research group, talk about the deep end. I went to the Centre and met someone who could help and understand. This was a big turning point. With her I learnt many things, like how I can best learn. But the biggest thing was that I as person came out of the shadows to feel the warm glow of the sun without fear and limitation.
It has just occurred to me that until this moment I have never thought about what if? What if I was not dyslexic. This may sound surprising, but I am dyslexic. Just like I am a man. I have always concerned myself with no what I can’t do, but with what I can do. I cannot change being dyslexic but I can change the effect it has. I think this realistic approach to dyslexia and life is one of the positive side to it. Another is the feeling that comes with success and achievement, such as to be able to participate in one of man kinds greatest achievement, the written word. The ability to pass knowledge and experiences from one generation to another. This, many may take for granted, as I would take walking. A simple and at times dull activity. But what joy and wonder one would feel, if achieved, when previously perceived as impossible. Every time I read a book and learn and remember the knowledge that is within, I achieve something that I once perceived as impossible.
So where am I now? I am 36 and have long since come out of the dyslexic closet. I also wrote what you are now reading, which is far in a way the best description of where I am and what I can achieve.
The client who wrote the above has been in touch with us recently as he brought his children to be assessed. Both are dyslexic but it seems unlikely that they will endure the same experience, as early identification and intervention as well as parental support should minimise the impact on their skills and their emotional development.
1
Dyslexia in the Adult Years
Synopsis.This chapter describes the characteristics of dyslexia in the adult years, and the current scientific and theoretical explanations for these. A pragmatic model based on interactions within the working memory system is proposed as a way of understanding dyslexia as it affects people during the adult years.
Introduction
Dyslexic people seeking the advice, guidance and support of professionals usually want the answers to the fundamental questions, ‘Why do I find certain tasks difficult?’ and ‘What can I do about it?’ Alternatively, those referring people for evaluation and advice are asking, ‘Why is this person not learning or performing in the way we expect?’ and ‘What can be done about it?’ The subject of this book is the interventions that address these questions and enable dyslexic people to work towards becoming successful in education, employment and life generally.
In the first edition of this book we wrote that ‘the past decade has seen a greater interest in dyslexic adults’ (McLoughlin et al., 2002: 1). There has been an even greater interest in the subsequent decade. This has been prompted, at least in part, by disability discrimination legislation. Nevertheless, this still does not mean that adults have been recognised as a distinct population, with needs that are quite different from their younger counterparts. There has been more research, but the majority of studies focus on students in third tier education and the population ranging in age from 18 to 25 years of age, a period that has become known as ‘emerging adulthood’ (Arnett, 2004). In terms of practice there are many more individual professionals as well as organisations providing services for dyslexic adults, but a greater number of ‘experts’ does not necessarily mean that there is more expertise. Often the practices adopted when working with children are inappropriately generalised to work with adults, who as Patton and Polloway pointed out twenty years ago ‘are not and should not be regarded as children with a learning disability grown up’ (Patton & Polloway, 1992: 411). Nevertheless, most interventions from assessment through to tutoring and accommodation are directed to the adult population who are still in education, and methodologies based on models developed for work with children. Even dyslexic people themselves perceive it as an educational issue, this being advanced as one of the reasons for the failure to disclose it to employers (Martin & McLoughlin, 2012). There is still a need for a fundamental shift in thinking on behalf of professionals, researchers, and all the organisations concerned with providing for dyslexic people. That this is the case is reflected by two reports published in the United Kingdom within the last decade: Rice and Brooks (2004) and Rose (2009).
On its release the former, Developmental dyslexia in adults: a research review, proved sufficiently controversial for Advocacy and Self-Advocacy groups representing dyslexic adults to call for its withdrawal. Although undoubtedly pleased that this population was being regarded seriously enough to warrant the commissioning of a report of this kind, they were disappointed both by the conclusions and the foundations on which they were based. The authors failed to acknowledge that dyslexia is still an evolving concept, as is the case for all the specific learning difficulties, and that there has been a fundamental paradigm shift, dyslexia having come to mean much more than a reading problem to such groups, as well as practitioners. There is now a better understanding of dyslexia at a cognitive level, and this has broad implications for everyday performance. Reading and spelling difficulties are skill deficits that can occur for many reasons, including lack of education.
In the Executive Summary the authors write: ‘dyslexia has been interpreted widely, to embrace most if not all of the ways in which the term has been used by scientists and educationalists’ (Rice & Brooks, 2004: 11). It wasn’t as Part One begins with the question ‘Why do some people find it so difficult to learn how to read, write and spell?’ They should have also asked: Why do some learn to read but continue to find spelling difficult? Why do some people achieve good accuracy, but find it hard to retain what they read? Why do people who master skills they found difficult to acquire, such as reading and spelling, report problems in domains such as organisation and time management? It is only by asking the right questions in the first place that we can evaluate definitions and explanations. Suggesting that if the word `dyslexic’ were to disappear ‘science and the world of literacy teaching and learning might be no poorer’ (Rice & Brooks, 2004: 87), is unhelpful and suggests a bias that undermines the credibility of the report.
Further, whilst the authors make much of the notion that poor readers and/or dyslexics do not constitute a homogeneous group they assume that adults do. Adulthood is the longest stage of human development. There is an enormous difference between the challenges faced by an 18-year-old and those facing a 45-year-old. Learning difficulties need to be understood in contexts, one of them being the stages of development. Dyslexic adults are more than ‘grown up children’ (Price & Patton, 2002: 38). In a review of the Rice Report, Siegel and Smythe (2006) comment that it ‘fails to fulfil its intent by providing an incomplete literature review which ignores critical definitional issues and important studies of the basic cognitive processes, as well as failing to include much of the research on appropriate interventions and accommodations for adult dyslexics, pivotal in understanding the literacy needs of the adult dyslexic’ (p. 69). One might add an understanding of all their needs.
In the Rose Report, Identifying and Teaching Children and Young People with Dyslexia and Literacy Difficulties, dyslexia is defined as follows:
Dyslexia is a learning difficulty that primarily affects the skills involved in accurate and fluent word reading and spelling.Characteristic features of dyslexia are difficulties in phonological awareness, verbal memory and verbal processing speed.Co-occurring difficulties may be seen in aspects of language, motor co-ordination and mental calculation.On the positive side, authors of the report accept that dyslexia exists and the definition goes beyond reading and spelling, acknowledging that there can be co-occurring difficulties in language, organisation and aspects of maths. The focus of the report was ‘children and young people’; but despite this the above is being promoted as a new definition of dyslexia that applies across the board.
It is always difficult to make international comparisons as there are differences in terminology. Nevertheless, in the Learning to Achieve report considering learning disabilities, including dyslexia, prepared by the American National Institute for Literacy (Taymans, 2009) it was concluded that:
In summary, this report is to be commended as it clearly acknowledges that ‘specific’ in specific learning disabilities such as dyslexia refers to neurological and, therefore, cognitively based causes that are independent of general intelligence and other potential causal factors, and have an impact on performance throughout the life span. It addresses homogeneity, heterogeneity and co-occurrence, but acknowledges the influence of environmental factors, including transitions, on outcomes for people who have a specific learning difficulty.
Although there have been more studies considering the problems facing and the needs of adults, there is no real research agenda, small projects being undertaken by particular individuals or groups. Conducting empirical studies with adults where they are not a captive audience is difficult, finding samples that represent specific populations being a particular problem, as is establishing control groups. Volunteers are likely to be the ‘most needy’, others being reluctant to participate, sometimes because they want to be left alone to get on with their lives. From a research perspective and for whatever reason, in the main dyslexia has remained an educational issue, rather than one which affects daily living, including employment. Outcome research on the effects of interventions during the adult years, including the impact of disability legislation, is much needed but is in short supply (Gerber et al., 2011).
In Western society the majority of the population is over 16 years of age, and ‘the majority of the dyslexic population are adults’ (Eden et al., 2004: 412). Nevertheless, the needs of this group have been given far less attention than those of children still at school. Whilst this makes sense if one assumes that early intervention will minimise the impact of dyslexia on people’s lives, it is unfortunate. Considering the nature of dyslexia as it is manifested across the life span should lead to a greater understanding of the needs of dyslexic children. It is only by taking a long-term view that we will develop a complete understanding of the nature of dyslexia and how it affects people, and provide appropriately. Furthermore, the persistence of dyslexia in the adult years raises important issues about definition, with consequent implications for practice. It demonstrates more clearly than anything else that the focus should be underlying processing abilities rather than observable behaviours (Vellutino et al., 2004).
To take advantage of the provisions of disability discrimination legislation both in the United Kingdom and in the United States, for example, a dyslexic person must establish that their difficulties constitute a mental impairment that has significant day to day effects (UK) or substantially limits one or more major life functions (USA). A narrow view based on the experiences of children and focused on literacy or education will not protect dyslexic people from discrimination, nor will it allow them to access important resources. This is best illustrated by a United Kingdom Employment Tribunal decision in which it was determined that an individual should not be considered to be disabled within the meaning of the Disability Discrimination Act, 1995. The decision was based in part on the claimant’s educational background. He was educated to degree level, and had received positive appraisals about his report writing at work. This was, however, someone whose processing abilities were within the bottom 1 per cent of the population, and who had significant problems with silent reading speed and comprehension, as well as writing speed. He had allowed himself four hours travelling time to keep an appointment, a journey that would take most people an hour. There was reference to his ability to drive, but not to the fact that he had taken the test more than ten times before passing, and that he no longer drove because, having informed companies of his difficulties, the insurance premiums he was quoted were prohibitive. The ‘day-to-day effects’ or ‘substantial limitations’ were patent, but the Tribunal could not see beyond dyslexia being a reading and spelling issue. In commenting on a young dyslexic woman’s personal account of the difficulties she experienced Wehman (1996) wrote ‘that “dyslexia” does not do justice to the complexity of the experience, the effort required to compensate and cope, or the many other aspects of life that are affected’ (p. 347).
Establishing a large body of quantitative data might be an unachievable goal so we must rely on the small scale studies which exist, as well as the individual experiences of dyslexic people and those working with them to underpin interventions. The latter provides only qualitative data, but it can contribute to understanding, as well as inform theory and practice (Everatt, 2007). There are also several factors that should influence good practice in assessment, coaching, teaching, training and employment, including:
The first of these is described in this chapter. Chapter 2 describes ii to iv and the last is discussed in Chapter 10.
History
The notion that people can have specific difficulties with reading despite being able to perform effectively in other areas has been around for a very long time (see Miles & Miles, 1999). Nevertheless, dyslexia is one of the specific learning difficulties and the real thrust in understanding these came in the 1960s. In particular, Kirk (1992) proposed a causal model that assumed the concept applied to individuals with average or better than average intelligence, but who experience difficulties at one of four levels:
Input – from the senses.Integration – the brain interpreting this information.Memory – the information being stored and retrieved.Output – behaviour including reading, writing and language.The last of these is the result of difficulties at one or more of the first three, although the emphasis in understanding specific learning difficulties is now on integration and memory process, rather than perception. Letter reversals, for example, were originally interpreted as being associated with the latter, but would now be attributed to cognitive/linguistic processes. This model is still relevant today, but too much of the literature still focuses on output or observable behaviour. Historically, the notion that we are addressing a population with average or better than average intelligence has been central to the concept of specific learning difficulties. Even those definitions that focus on specific deficits in the cognitive processes related to reading, such as phonological processing, refer to them as being ‘unexpected in relation to other cognitive abilities’ (Lyon, 2003: 2). The American Individuals with Learning Disabilities Act (IDEA), 2004 defines a specific learning disability as ‘a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which may manifest itself in the imperfect ability to listen, think, speak, read, spell or do mathematical calculations’ (Flanagan & Alfonso, 2011: 5). It excludes general learning disabilities.
There has been considerable academic debate about the relevance of intelligence and IQ in particular to the definition and identification of dyslexia, as well as specific learning difficulties generally (Siegel, 2003). Much of this is spurious, as it is the content of tests that make up IQ scales that is important rather than the Intelligence Quotient itself. In its historical context and in our view statements such as ‘dyslexia occurs across the range of intellectual abilities’ (Rose, 2009: 10) contradict the original conceptual understanding of specific learning difficulties and are unhelpful. They raise false expectations amongst individuals who have trouble with literacy, but whose difficulties are much more complex than this. Telling someone whose cognitive abilities are consistently at the sixteenth percentile that they are dyslexic, implying that their difficulties are specific rather than general, leads them to attempt educational programmes and seek occupations that will only cause them frustration. Having a general learning disability and being dyslexic are mutually exclusive, even though there might be similar behavioural characteristics.
Terminology
As dyslexia has been and continues to be regarded as an educational issue, much of the language surrounding it belongs to the world of education, particularly special education, and we find it very hard to get away from it. Viewed from the adult perspective a good deal of the terminology is inappropriate. One should not, for example, suggest that the manager seeking to improve his report writing skills is in need of ‘remedial help’. Many professionals prefer the term `specific learning difficulty’, using the term synonymously with dyslexia. The latter is a specific learning difficulty but only one of a number, including dyspraxia, dyscalculia and attention deficit disorder, sometimes referred to as ‘hidden disabilities’.
The generic term ‘learning difficulty’ is inappropriate for many dyslexic adults. It places the emphasis on education and many have learned very well, albeit differently, but continue to have a ‘performance or life skill difficulty’. We are using the word `dyslexia’ here in its very broadest sense, that is as ‘a family of lifelong manifestations that show themselves in many other ways than poor reading’ (Miles, Haslum & Wheeler, 1998). Dyslexic people can find learning difficult, but in the adult years their ability to ‘perform’ in social, family and work settings is of greater concern. The term ‘compensated dyslexic’ is often used to describe those individuals who have mastered reading and writing. Literate dyslexics is better, as it implies that people are still dyslexic even if they can read and write.
Further, it has been suggested that it is preferable to refer to ‘people with’ or ‘people who have’ dyslexia. We continue to use phrases such as ‘dyslexic people’ or the word ‘dyslexic’, having met few, if any, who have described themselves as ‘an adult with dyslexia’. Some of our clients have specifically disregarded phrases such as ‘a person with dyslexia’ because of their medical connotations.
Defining Dyslexia
Defining dyslexia has remained an elusive business. There are many definitions formulated by advocacy groups, practitioners and researchers (see Rice & Brooks, 2004). Gigorenko (2001) has written that the ‘quilt of definitions covering the body of developmental dyslexia is a subject for research on its own’ (p. 93). The discrepancy between ability and attainment in literacy, particularly reading, has been the focus but should now be considered unsatisfactory for a variety of reasons (Siegel & Smythe, 2008). Discrepancy definitions are entirely behavioural (Ramus et al., 2003), and there have been suggestions for some years that we need to move away from them (Frith, 1999). There are those, however, who still maintain that we should focus on symptoms rather than causes (Uppstad & Tønnessen, 2007). Definitions should reflect knowledge at a particular time. We now know a great deal about the cognitive abilities that correlate with learning and performance, including the development of literacy and numeracy skills. The focus should be on cognitive processes rather than observable behaviour.
Nevertheless discrepancy definitions persist and the proposed revision to the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM 5) will include dyslexia rather than just reading disorder, but the suggested criteria for diagnosis are similar to those in DSM IV. That is:
Discrepancy definitions are particularly inappropriate for adults who have been able to develop their literacy skills to a level at which the discrepancy is no longer obvious. Some individuals can ‘achieve typical and even superior levels of reading performance in adulthood’ (Grigorenko, 2001: 84). According to a discrepancy definition, such people would no longer be dyslexic, despite clearly continuing to experience difficulties that stem from the same cognitive deficit responsible for their slower acquisition of literacy skills. Attempting to apply a discrepancy definition to adults who are no longer in formal education illustrates both the flaw in such a definition, and the failure to address dyslexia in the context of adulthood. As adults we need the skills we need, not those reflected by test norms.
In a critique of the British Psychological Society’s Division of Educational and Child Psychology (DECP) working definition, ‘Dyslexia is evident when accurate and fluent word reading and/or spelling develops very incompletely or with great difficulty’ (BPS, 1999: 5), Cooke (2001) quite correctly wrote that the definition ‘will cause serious concern to dyslexic adults – particularly those who are sometimes (inappropriately) called ‘compensated’ dyslexics – those who have few problems with reading but have all kinds of other problems’ (Cooke, 2001: 49). The emphasis on observable accuracy and fluency, whilst occurring in many definitions, fails to take into account the purpose of reading: that is, being able to access and understand information. What is needed is a definition that addresses dyslexia as it impacts on people across the life span, or at the very least one that is specific to the adult years.
Evidence-based Practice
Much practice with dyslexic adults remains what has been termed ‘nomothetic’: that is, a ‘one size fits all’ approach that assumes dyslexic people form a homogeneous group and interventions involve the best approach for an average person. Dyslexic people form a heterogeneous group; they have things in common but their needs vary considerably. What is required is an ‘idiographic’ approach where decision making and solutions are for individuals.
In the health and allied professions there has been an international move towards evidence-based practice, described as the ‘conscientious, explicit and judicious use of current best evidence in making decisions’ (Bauer, 2007: 685). ‘Evidence-based practice in psychology is the integration of the best available research with clinical expertise in the context of patient characteristics, culture and preferences’ (APA, 2009; cited in Spring, 2007).
What have been described as the three pillars of evidence-based practice are shown in Figure 1.1.
FIGURE 1.1 The Three Pillars of Evidence
Given that the concept has evolved in the health professions, the terminology surrounding evidence-based practice has a medical connotation but the three pillars are:
(Spring, 2007: 613)
A simple example of how this might apply when working with dyslexic adults is making recommendations about accommodations or adjustments in a test setting. It has become standard practice to recommend a 25 per cent extra time in test settings. Allowing extra time has been shown to ‘level the playing field’ (see Chapter 10), but the figure of 25 per cent is entirely arbitrary and not research based. The adjustment is, therefore, nomothetic. An idiographic approach would be:
An idiographic evidence-based approach is essential if specific needs are to be met and ‘the effectiveness of an accommodation in enhancing an individual’s performance is dependent upon a professional’s knowledge of the specific cognitive, affective and language processes that influence different types of learning demands’ (Gregg, 2009: 19).
Evidence-based practice can also contribute to establishing equity, both real and perceived. Media attention has been given to suggestions that dyslexic people are advantaged by adjustments such as being allowed extra time to complete examinations, and research has demonstrated that adjustments such as giving more time to a person with a disability, particularly where the disability is dyslexia, lead to perceptions of unfairness (Paetzold et al., 2008).
Evidence is provided by a variety of different approaches to research, some considered to be much better than others. There are several schemas that allow the grading of the strength of evidence based on research design (see West et al., 2002). There are four levels, summarised in Table 1.1.
Table 1.1 Schema for Grading Strength of Evidence in Research
GradeCriteriaIEvidence from studies of strong design; results are free from serious doubts about generalisability, bias, and flaws in research design.IIEvidence from studies of strong design but there is some uncertainty about generalisability, bias, research design flaws, or sample size.IIIEvidence from a limited number of studies of weaker design.IVSupport solely from informed commentators based on practical experience.The research evidence for dyslexia is provided by all of the above, but a great deal of the literature on adults is based on Grade IV evidence. There are, however, studies that consider cognitive differences which would meet Grade I criteria. We would have preferred to only rely on the research that has been based on adult populations but, as there is evidence from longitudinal studies that suggests that ‘deficits in underlying cognitive processes’ persist well into adulthood (Maughan et al., 2009: 898) reference to some of the studies of child populations is legitimate.
Frith (1995, 1999) described a framework that provides a useful way of organising what we do know, as follows:
Biological Differences(Genetics and neurology)↓Cognitive Differences(Information processing)↓Behavioural Differences(Primary behavioural characteristics, e.g. reading)These differences interact with each other, as well as the environment. The latter can include very particular factors such as orthography. There is a substantial literature on the impact of the same cognitive processes on particular languages and writing systems when individuals are learning to read. More general factors include educational and life experience, language and culture. In order to understand dyslexia in its broadest context as it can be manifested and is reported during the adult years we begin with the last.
The Nature of Dyslexia: Behavioural Characteristics
Although in many countries dyslexia is still viewed as a reading difficulty, there does seem to be some agreement that the problems experienced by dyslexic people extend beyond literacy skills. In countries where the term `learning disability’ is used to include dyslexia there is greater recognition of this. There has yet to be a large scale systematic survey of dyslexia in the adult population that attempts to identify the incidence, and more specifically its nature.
The understanding we have of dyslexia is based in our professional training and background, but has been influenced enormously by what we learn from the dyslexic people we work with on a daily basis. Our experience is their experience, and this will have been shared by other practitioners. Reiff et al. (1993) wrote that:
First hand experience is vital for helping professionals in the field of learning disabilities to understand and appreciate the realities of living with learning disabilities. Such information provides a useful yardstick for measuring current conceptualisations, for one criterion of a definition’s validity must be the ability to reflect or correlate with the experiences of those who receive a label based on that definition. Furthermore, those insider’s perspectives may provide a foundation for formulating a new definition that blends current theoretical constructs with first hand experience. (Reiff et al., 1993: 116)
The insider perspective is only level IV evidence but ‘the relationship between science and practice should be a two way street, with each informing the other’ (Pennington, 2009: 39). Often practice is well ahead of science, the latter providing a post-hoc rationale for the former, and scientists sometimes have insufficient exposure to those they are researching and writing about. We cannot say how often they occur exclusively amongst the population of dyslexic adults but, in our experience, those seeking advice and support manifest a number of observable behavioural and affective characteristics. These are listed below, and illustrated by comments from dyslexic people.
Observable Behavioural Characteristics
The primary behavioural characteristics that constitute dyslexia include:
Organising my life is an arduous task.
Spelling and numeracy problems are still predominant but I now have strategies to cope with them – on the whole. Knowing left from right and reading the time prove to be problematic (because they tend to have to be performed quickly, removing the opportunity for using strategies). I am incapable of reading aloud and this is a problem when I try to read to my daughter.
You open your mouth to say something and then silence – only a blank space in your head.
Affective Characteristics
The observed and reported affective characteristics are:
Dyslexia affects people in different ways, personally it affected my self-confidence I was always made to feel lazy, stupid, ugly and sometimes even worthless. When I was diagnosed as dyslexic it was more a relief than anything else, so this is why my handwriting is like this and that’s why I have problems with essays (putting information under the right section), that’s why my maths is so bad that’s why I always have problems with numbers, I remember once when I was at school someone asked me for my telephone number but I just got more confused and frustrated and couldn’t remember it so I felt stupid.
It’s never being sure you are right.
I have a lot of anger still about all the failed tasks and why none of the professionals who taught me stopped to ask what was wrong with this child who couldn’t produce the written work equal to her other skills. I wish they had.
I feel completely out of control and unable to function. Others may tell me that I am not out of control, but that does not alter how I feel: I feel disorientated, I keep forgetting things – my short-term and working memories are terrible, I mislay things all the time – I can’t concentrate for more than a few seconds – I can’t make even the simplest decision about anything – silly little decisions hold me up for hours – I feel worn out and as if on another planet much of the time – terribly stressed and at the point of collapse – only I never do collapse! I just carry on laughing it off and covering it up – trying even harder to cope when I can’t.
Can you imagine the feeling of anxiety building up every time you pick up a pencil, the feeling of despair every time someone asks you to read something with them present; or even worse the dreaded ‘reading out loud’. The annoyance and embarrassment every time someone corrects your pronunciation or spelling. The feeling of frustration at being unable to read or write at the same speed as others. The thought that although you might have spent enormous time and effort in completing a piece of work, the chance is that it still has mistakes. The fear that you are always wrong, and pure frustration that what is in your head leaves your hands and mouth distorted.
Being dyslexic obviously creates problems with study within ‘normal’ systems, as the majority of schooling and higher education is based entirely on the written word. So this alone leads to stress and frustration, but for me the secondary factors of being dyslexic, anxiety and lack of self confidence have had more of an impact on me. It was not until I started to research dyslexia for this learning profile, that I realised how closely related they are.
Affective characteristics are no less important than the primary ones, and are often more difficult to resolve. It can be easier to teach someone to read than it is to improve their confidence. Even highly successful dyslexic people express doubts about their ability. Their confidence always remains fragile and setbacks can be enormous. There is often an incorrect assumption that success in some areas of life will generalise to all aspects. Wolf (2008) quotes from a speech made by former world champion racing driver Sir Jackie Stewart in which he said ‘you will never understand what it feels like to be dyslexic. No matter how long you have worked in this area, no matter if your own children are dyslexic, you will never understand what it feels like to be humiliated your entire childhood and taught every day to believe that you will never succeed at anything’ (Wolf, 2008: 166). Further, there is a two-way interaction between behavioural and affective factors, and this influences performance from day to day.
On a good day, I imagine that I am a highly creative and intelligent (an original thinker), with amusing and endearing quirks. Work goes better than ever, I feel I’m moving forward in strides and that I am appreciated!
On a bad day, however, I feel overwhelmed, confused and worried about my ability to cope. If I have a lot of work or something I find difficult to do, trying to organise a plan or schedule can send me into a panic. Just the mental act of keeping numerous dates, names and important information in my head is tricky. I feel I’m moving at a snail’s pace and at times like these my workroom can begin to resemble the chaos in my mind, with papers spread higgledy piggledy. If I am cold calling people for work/research, I have to do several mini rehearsals first, otherwise I risk sounding tongue tied.
Often I am unable to hold on to the thoughts for long enough for me to form a sentence – either written or spoken. Using a computer helps, in that I can wipe out bits as I go along and keep the text neat and tidy. Handwritten notes always end up in a terrible mess these days – although it used not to be so. But even when using a computer, it is still difficult and of course my eyes feel strained.
Positive Characteristics
The problem with labels is that they refer to only one aspect of a person’s life. Dyslexia refers to what people can’t do, the risk being that what dyslexic people can do is overlooked.
Dyslexics are usually very creative people they have to be to overcome some of the difficulties they are faced with. Because we think in pictures, dyslexics are usually artistic. They are lateral thinkers and overcome problems by thinking laterally. I would also say that people with dyslexia are more articulate they say things verbally better than maybe in writing. Of course if you are speaking you don’t need to bother with logical ordering or handwriting or spelling. To overcome dyslexia you need to be efficient and more organised than if it did not affect you.
Amongst positive characteristics reported are:
entrepreneurship;strategic thinking;artistic ability, particularly where good visual-spatial skills are required;innovative thinking skills;a holistic approach to problem solving;empathy.I think dyslexia forces one to have a more individual viewpoint on life because evidence suggests we think more holistically. Numerous artists, musicians and actors are / have been dyslexic, as well as famous scientists / inventors and so on. I would hope I am better able to empathise with people who experience difficulties in learning or life in general. I also hope I am more open to different learning approaches, even different philosophies, trends, and so on. Some think that dyslexia can ‘give you the edge’ on your chosen field because you have to be more thorough in your study / practice by necessity.
Much of the so called evidence for the above is based on anecdotes and speculation about an ever growing list of creative and gifted people, such as Einstein, but is sometimes reflected in simpler activities.
I can see the finished design of the cakes I produce before I even start. I can also assemble items very quickly. I also consider myself to be a good leader and others are happy to follow.
The talents of dyslexic people are promoted by advocacy and self-advocacy groups, as well as individuals themselves, although this is not always the case.
I’d like to say yes there are loads of positive things about being dyslexic, unfortunately, I just see it as a pain in the arse. The way I tend to look at my situation is: it could be worse I could be stupid and there is no way back from that. To the best of my knowledge there isn’t an operation that cures stupid. I’m fortunate, I have ‘brains’, it was just not immediately apparent, to the education system, nor myself, how to utilise them.
In our experience dyslexic people can also be very:
persistent;determined;hard working;resilient.Not enough attention is paid to those dyslexic people who have demonstrated such qualities and worked effectively in fairly ordinary jobs. They have needed to be in order to be successful. The perseverance many dyslexic people have shown is impressive. This is supported by the risk and reliance research described in Chapter 2.
Behavioural Characteristics: Empirical Evidence
There are a number of systematic studies that have shown how some of the behavioural and affective characteristics described above persist into adult years. These include problems with all aspects of literacy, numeracy and academic performance generally. There are also studies that have considered occupational outcomes, as well as emotional development (see Gerber, 2012 for a review).
Not enough research has been conducted and many studies are based on samples of individuals in emerging adulthood. Nevertheless, Maughan et al. (2009) were able to follow up middle-aged individuals who had been identified as poor readers in childhood and found that on the basis of testing the majority continued to experience difficulties with all aspects of literacy including spelling, and they also reported difficulties in activities such as letter writing and filling in forms.
Few studies have addressed broader issues, but in an on-line study of graduates who had received accommodations whilst at university a significant number reported difficulties in areas such as time management and organisation. They also reported strengths in big picture thinking, empathy, persistence and determination (Martin & McLoughlin, 2012).
Explaining Characteristics
One of the underlying themes in this book is understanding. Philosopher of science Peter Lipton wrote that understanding ‘is not some sort of super-knowledge, but simply more knowledge: knowledge of causes’ (Lipton, 2004: 30). Most academic research is based in the logical positivist tradition and the focus is on the likeliest explanation: that is, the one most warranted by the evidence. Academic researchers, perhaps correctly, rarely go beyond this. Given the dearth of empirical studies dedicated to dyslexia in the adult years this would provide a very limited picture. We need to rely on the empirical evidence and the theory it has informed and draw inferences from the latter to provide what Lipton referred to as ‘the loveliest explanation’: that is, ‘the one which would provide the most understanding’ (Lipton, 2004: 207). This is best provided by combining all levels of evidence. We cannot just rely on anecdotal accounts and self-report, although these provide richness and reality.
Biology and Neurology
There is strong evidence for heritable factors being the initial cause of dyslexia and ‘it is well established that dyslexia is a neurological disorder with a genetic origin’ (Ramus, 2003: 841). This is derived from family studies, where the relatives of children with reading problems perform less well on reading tasks than those whose children do not have such difficulties, and more convincing evidence comes from twin studies (Pennington, 1990; De Fries, 1991; De Fries, Alarcon & Olson, 1997; Pennington & Olson, 2005). The process of transmission is not fully understood, and multiple genetic factors are thought to be involved (see Pennington, 2009; Grigorenko, 2001; Wolf, 2008 for an overview). The experience of interviewing dyslexic people provides much evidence of a family history of dyslexic type difficulties, although this is by no means universal. Further, it is not the behavioural characteristics such as a reading or spelling difficulty that are inherited, but the neurological and cognitive difference.
It has been established that dyslexics show significant neural organisation differences to non-dyslexic people. These differences persist throughout the life span, and are regarded as the fundamental cause of the characteristics manifested by dyslexic people at a behavioural level (Bigler, 1996). That is, they are dyslexic essentially because of their neurological make-up. The evidence comes from structural neuro-anatomic and imaging studies, as well as functional imaging studies.
