Living With Dyslexia

The social and emotional consequences of specific learning difficulties/disabilities

Barbara Riddick

• Publisher: Routledge
• Year: 2009
• ISBN:
  9781135191740
• Edition: 2
• Topic: Bildung
• Subtopic: Bildung Allgemein

This book reinforces the need for understanding and support for children
with dyslexia from parents and teachers, but also the importance of the
children's own understanding of their strengths and weaknesses in order
to fulfil their potential. It should be recommended reading for all
those involved in dyslexia. - Professor Angela Fawcett, Director of the Centre for Child Research, Swansea University

What is it like living with dyslexia on a day-to-day basis?

Based on interviews with dyslexic children and their families, this insightful book presents first-hand accounts of how dyslexia affects the children themselves and the people around them.

Living with Dyslexia, Second Edition places the original fascinating findings within the context of current research and practice in the UK, Europe, Australia and the USA. The author:

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• examines issues of confidence and self-esteem;

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• explores the coping strategies adopted by children and adults with dyslexia;

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• investigates the concept of dyslexia-friendly schools;

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• studies how children were first identified as having dyslexia, and the social and emotional difficulties they encountered;

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• offers guidance on how teachers and parents can best support children with specific learning difficulties;

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• considers the cognitive, educational, social and emotional perspectives in order for teachers and parents to gain a better understanding of dyslexia.

This new edition provides an updated account of cognitive research and examines important changes in relation to Special Educational Needs policy and practice in the last ten years, including the Revised SEN Code of Practice (2001), Removing Barriers to Achievement (2004) and the National Literacy Strategy (2006).

Living with Dyslexia recognises that the voices of children with dyslexia are increasingly important in developing good educational practice and makes an important contribution to the literature on dyslexia.

Chapter 1
Defining dyslexia

An overview of dyslexia and specific learning difficulties

‘When I use a word,’ Humpty Dumpty said in a rather scornful tone, ‘it means just what I choose it to mean–neither more nor less.’

‘The question is,’ said Alice, ‘whether you can make words mean so many different things.’

‘The question is,’ said Humpty Dumpty, ‘which is to be master–that’s all.’

(Lewis Carroll, Through the Looking Glass, 1865)

In the UK the terms ‘dyslexia’ and ‘specific learning difficulties’ are often used synonymously although most authorities would see ‘specific learning difficulties’ (splds) as an umbrella term for a range of learning difficulties of which ‘dyslexia’ is one variant (Teachernet 2009). At a very general level educationalists and particularly educational psychologists tend to prefer the term ‘specific learning difficulties’ and clinicians, voluntary organisations and concerned lay people the term ‘dyslexia’. These differences of opinion can be seen as partly due to the different perspectives that educationalists and clinicians are likely to have. As the purpose of this book is to look at the views of people who have chosen to live with the term ‘dyslexia’, this is the term that has been used predominantly, although where quoted research or writing has used other terms such as ‘specific learning difficulties’ or ‘learning disabilities’ these terms have been included.

At a common sense everyday level dyslexia is often defined as an unexpected difficulty in learning to read, write and spell. But like many definitions as soon as it is examined more closely it becomes more difficult to pin down and a number of problems and ambiguities arise. Who decides that the difficulty is unexpected, and on what basis? How behind does a child have to be for it to be counted as a difficulty and how is the difficulty judged or quantified? Do all children need to show the same sort of difficulty or can they show different types of difficulties and still be called dyslexic? In examining definitions of dyslexia it becomes apparent that different definitions highlight different aspects or levels of the problem. Frith (1992) has proposed that in looking at learning disabilities such as autism and dyslexia it is important to look at the links between the different levels of explanation so that we can begin to see the links between biological causation, cognitive impairments, and behaviours such as poor reading and spelling. The following definition, put forward by the World Federation of Neurology (1968) (cited in Critchley 1970), was widely used in the past and formed a platform for more recent definitions:

Dyslexia is a disorder manifested by difficulty in learning to read despite conventional instruction, adequate intelligence and socio-cultural opportunity. It is dependant upon fundamental cognitive disabilities which are frequently of constitutional origin.

It can be seen that a definition like this includes behaviour, cognition and cause. Definitions like this are often referred to as exclusion definitions because it suggests that a child can be defined as dyslexic only if a number of factors are excluded. Critics would argue that this type of approach tends to favour the identification of middle-class children and may have led to the fallacious assumption that dyslexia is a ‘middle-class disorder’. To look at the problem another way it suggests that socially disadvantaged children or mildly learning disabled children cannot be defined as dyslexic. But the evidence we have so far suggests that the cognitive impairments underlying dyslexia are evenly spread across the population and are as likely to occur in these groups as any other groups. What has not been researched extensively yet is how the specific cognitive impairments underlying dyslexia interact with other impairments such as a hearing disability or with environmental factors such as lack of exposure to the printed word. It may for example be the case that, whereas under optimal conditions children can compensate for a certain degree of specific cognitive impairment, these same impairments coupled with an unfavourable environment may lead to considerable difficulties in learning to read and write. Similar problems exist with what are known as discrepancy definitions of dyslexia. In this case it is the child’s poor performance in learning to read and write in relation to their age and level of intelligence that is stressed. Critics would again argue that this tends to favour more intelligent and more middle-class children where it is supposed that the gap between their expected performance and their actual performance is more apparent. Another difficulty is that obvious discrepancies between reading and spelling scores tend to diminish as children get older so that by adolescence this approach will exclude many children who do have the specific cognitive impairments underlying dyslexia such as poor short-term memory. Korhonen (1995) found for example in a longitudinal study that children who had reading difficulties at 9 years of age had a significantly worse digit span at 18 years of age, were significantly worse on a word fluency task and were slower and more error prone on a spelling task in comparison with a control group. Research such as this underlines that older dyslexic children and adults still have difficulties which put them at a disadvantage especially in situations such as written examinations. So although discrepancy definitions may be good at identifying some children with dyslexia they may well lead to bias in who is identified and the underidentification of some groups of children. It should be pointed out that fewer practising psychologists now work on the basis of discrepancy definitions and even when IQ tests form part of a dyslexia assessment they are there to add information to the overall profile rather than to exclude children with lower IQs from being identified as dyslexic. Part of the reason for the reluctance of some educationalists to recognise dyslexia in the past may have been connected to their underlying disquiet about the way it was defined and the implications that this had for the identification of children and allocation of resources.

Another problem with some of the earlier definitions of dyslexia is that they defined dyslexia largely or exclusively in terms of a reading problem. Although learning to read is invariably a problem, the majority of dyslexic children do eventually learn to read. In order to deal with these kinds of criticisms modern definitions of dyslexia have tried to specify the cognitive impairments underlying dyslexia and the range of skills affected by such impairments. The following definition is given by the British Dyslexia Association (BDA 2009):

Dyslexia is a specific learning difficulty which mainly affects the development of literacy and language related skills. It is likely to be present at birth and to be life long in its effects. It is characterised by difficulties with phonological processing, rapid naming, working memory, processing speed and the automatic development of skills that may not match up to an individual’s other cognitive abilities. It tends to be resistant to conventional teaching methods, but its effects can be mitigated by appropriately specific intervention, including the application of information technology and supportive counselling.

Although critics might disagree with the specific details of this definition few would disagree with the need to have a definition that draws on the considerable body of cognitive research. One point that emerges more clearly from this type of definition is that dyslexia should be regarded as a complex phenomenon with different individuals showing different combinations or expressions of these underlying difficulties. Another point is that it is the underlying problems in short-term memory and speech sound recognition that should be emphasised. It may be that like autism, where the term ‘autistic spectrum disorder’ is often used, we will move in the future to talking about a dyslexia spectrum.

International perspectives

In the US and Canada the term ‘learning disability’ (LD) is roughly equivalent to the UK term ‘specific learning difficulty’. The Learning Disabilities Association of America (2009) describes learning disabilities as

neurologically based processing problems. These processing problems can interfere with learning basic skill such as reading, writing or mathematics. They can also interfere with higher-level skills such as organization, time planning, and abstract reasoning.

They point out that this term covers a wide variety of specific cognitive difficulties which are not the result of inadequate instruction or low intelligence. It is estimated by the association that 6 per cent of the school population have an identified LD for which they receive support. There is a broad consensus that 70–80 per cent of the children classified as LD in North America are identified as having a specific reading disability (RD). It is also the case that a high proportion of children classified as reading disabled would meet the criteria for prevailing UK and US definitions of dyslexia. In the US the International Dyslexia Association (IDA 2007) defines dyslexia as

characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction.

Siegel (2003) in a paper on reading disabilities in North America says that she thinks the terms ‘reading disability’ and ‘dyslexia’ are synonymous. She also observes that ‘fear and disdain of the term “dyslexia” is common in North America’ and that as a consequence it is less often used than in some other parts of the world.

Because of the move away from discrepancy definitions in the US the Individual with Disabilities Education Act (IDEA 2004) has stipulated that a significant discrepancy between intellectual ability and achievement must not be required in order to identify a specific learning disability. In the US in particular the notion of response to intervention has been suggested as the way forward in defining reading disabilities/dyslexia (Fuchs and Fuchs 2006). The general argument is that particularly in less advantaged social groups up to 30–40 per cent of children may make a slow start in reading because of lack of sufficient exposure to reading and in some cases lack of appropriate scientifically based reading instruction. When such children are provided with appropriate reading experience and instruction many of them make considerable progress and would no longer be seen as having a reading problem. It is those children who have made relatively little or no progress despite such intervention who would then be deemed to have a reading disability/dyslexia. In a sense this is a more explicit version of the phrase ‘despite adequate instruction’ added in one form or another to many definitions of dyslexia. Although there are criticisms of this approach (see Chapter 2) it does address the issue of how to distinguish between children with fundamental processing difficulties in learning to read and children with more transient difficulties related to lack of experience and practice.

The current situation

A misleading assumption has been passed down that there is no consensus on defining dyslexia. As Siegel and Smythe (2006) point out there is a convergence of opinions among leading dyslexia bodies and researchers that difficulty with the development of accurate and fluent word reading is fundamental to contemporary definitions of dyslexia. The definition recommended to educational psychologists in the UK (BPS 1999) exemplifies this point:

Dyslexia is evident when accurate and fluent word reading and/or spelling develops very incompletely or with great difficulty. This focuses on literacy at the ‘word level’ and implies the problem is severe or persistent despite appropriate learning opportunities.

Siegel and Lipka (2008) in an overview of definitions of learning disability point out that although there is reasonably good agreement over theoretical definitions of learning disability the difficulty comes in agreeing how these definitions should be operationalised. In other words exactly what indicators and measures should be used to identify learning disability and by the same token dyslexia? Although defining dyslexia, and in particular operationalising it, can still be seen as work in progress, this is true of many labels and categorisations in that they all have to take account of new research findings and changing social attitudes. What is becoming apparent is that dyslexia is on a spectrum with a range of specific learning and language difficulties and that there is a continuum between good, average and poor readers. Snowling (2008) suggests we should conceive of dyslexia as a dimension rather than as a category.

As with many disabilities/differences, identifying the very severe or extreme examples is relatively easy; what is more difficult is deciding where to draw the line or even if it is appropriate to draw a line between individuals deemed to have a difficulty/difference and those deemed not to. If it is decided that drawing a line is inappropriate the issue then arises as to the best way to characterise the continuum between for example good and poor readers. It is also important that this does not send out signals that are erroneously interpreted by the wider world that dyslexia is after all, as widely believed in the past, a ‘myth’.

The impact and purpose of labelling

One of the difficulties with definitions of dyslexia is that different groups of people require a definition for different purposes. Genetic researchers who want a representative sample of dyslexic children may be looking for a definition that gives high precision, whereas teachers may want a definition that includes both indicators they have ready access to and suggestions for intervention. As Reid (2001) puts it, in asking the question ‘what is dyslexia’ (p. 11) many classroom teachers are in essence asking for a working plan as much as a definition of dyslexia. Many individuals with dyslexia and campaigning groups want definitions that, as well as emphasising their positive attributes, include the full range of difficulties they encounter in everyday life, such as spelling, writing and some aspects of memorising. So, even if the fundamental aspects of dyslexia are agreed upon, the way these are expressed or the emphasis that is put on certain features may differ depending on the intended audience.

Dyslexia and labelling: a personal view

All labels tend to have advantages and disadvantages attached to them especially when they are trying to encapsulate a complex entity such as dyslexia (Riddick 2000, 2001). Although the children and adults I’ve interviewed and discussed the label with over the years have been biased towards those who endorse the label, I’ve come across a variety of views from the highly positive to the highly negative. Much appears to depend on the way in which the label is offered to individuals and the pre-existing beliefs they have about the label. It also depends on how an individual would fare without the label or with an alternative label. Many of the children and students I have interviewed argue that at least having the label dyslexia challenges people’s incorrect assumptions about them and for example stops teachers calling them lazy or stupid (see Chapters 2, 5 and 10 for further discussion).

‘Reading disabled’ as used in North America may be a valid term especially with younger school children but there are problems with it. Nearly all the children correctly identified as reading disabled in the US and elsewhere will also have spelling, writing and working memory difficulties; a proportion will also have co-ordination difficulties. As children get older, with adequate support their reading will improve and for many their main difficulties by secondary age and beyond are in spelling and writing speed. The problem of having a label based on one process such as reading is that it only gives a partial representation of the difficulties an individual may face because of specific underlying cognitive difficulties/differences. It may also lead to less coherent long-term planning in terms of intervention and support. Some intensive reading intervention programmes have been ‘successful’ in improvin...