As a current affairs producer, every story you tell brings surprises. No story I have ever been involved with before though has produced as many eye-openers as the Channel 4 Dispatches programme ‘The Dyslexia Myth’.
There were numerous small revelations: ranging from the discovery that dyslexic children do not reverse their letters any more than younger children reading at the same level, to the discovery that the Government has so far introduced no fewer than 650 different initiatives in primary schools.
Then there were even more dramatic discoveries: poor readers with high IQs, usually seen as dyslexic, respond in exactly the same way to help with their reading as poor readers with low IQs who are rarely labelled as dyslexic.
The biggest shock was that the ‘dyslexia myth’ story which sounded so controversial when I first started the research, turned out not to be controversial at all. The idea that the common understanding of dyslexia is a myth was startling at first heard it. Yet I found it was a view shared by every academic that I talked to. The scientific consensus about it is overwhelming.
This poses two questions, both of which trouble me still, even though we did not deal with them in the documentary. I am raising them here in more detail.
The first question is why has the story not been reported before? The second is what is the future of the term dyslexia?
Why the silence?
The expert knowledge that the popular understanding of dyslexia as a ‘myth’, has been around for at least ten years. The research findings, taken collectively, are devastating. Yet they have never been properly reported to the public. Perhaps the reason for this is the inadequacy of the journalistic profession.
Or perhaps it reflects perhaps a bigger problem: a natural reluctance on the part of researchers to simplify and popularise the findings of other investigators. Although academics understand the big picture, few feel comfortable about dragging together all the different research findings about a complex subject, simplifying them and putting them together to provide a simple overview. Academics are rated on their ability to come up with their own findings, not on how effective they are at popularising other people’s research.
The future of defining dyslexia
The question of how dyslexia could be defined generated a lot of controversy in the run up to the documentary. The reason we did not deal with this in the programme is that there is simply too much disagreement about it. There are at least five major views about the future use of the term ‘dyslexia’.
View 1. The term dyslexia should be dropped completely.
It is said that dyslexia carries so many wrong associations, and is understood in so many different ways by so many different people, that it serves no useful scientific or therapeutic purpose. It should be replaced by ‘reading problems’ or in more severe cases ‘reading disability’.
I have a lot of sympathy with this view. As a journalist I like to know what words mean. There are problems though. The term dyslexia is so ingrained that a lot of people would still go on using it. There is also the fact that ‘dyslexia’ is a handy term for those trying to focus attention on the needs of those with reading problems.
View 2. ‘Dyslexia’ can be redefined to describe all children who find it difficult learning to read because of phonological problems.
This would provide a clear definition which would identify children who have a sufficient problem detecting the smallest sounds in words which make learning to read difficult. It would thus identify children who will need additional tuition in a small group or even one to one help.
This could result in labelling up to one fifth of children as ‘dyslexic’. Do we really want to suggest that so many children are in some way ‘disabled’? Given that so many children have problems learning to read, we should look upon difficulty in learning to read as an entirely normal experience for quite a lot of children.
View 3. ‘Dyslexia’ should only be used to describe children with the severest problems. These children will need not only small group teaching but also often skilled one to one assistance to overcome their problem. Such a definition has the merit that it would help institutions like the Dyslexia Institute focus attention on such children. Yet it would still label children as dyslexic who, with the right teaching at school, will learn to read perfectly well. It may also suffer from the difficulty of arriving at a cut off point. So on one side of this line a child would be labelled dyslexic, while on the other, a very similar child would not be.
View 4. ‘Dyslexia’ should be used only for the 1-2% of children with a long term reading problem who do not respond to the best school teaching currently possible. There is no doubt that these children need far more help than individual schools can provide, including diagnostic tests and long term support. This view is supported by many leading researchers . It would mean that ‘dyslexia’ defines a clear group of children who are significantly disabled and for whom special help is both needed and justified.
View 5. ‘Dyslexia’ should no longer be really associated with reading problems nor defined in relation to reading.
The argument is that there is a pattern disability, much wider than mere reading problems, which can be used to define who is, and who is not dyslexic. The problem is, that as far as I am aware there is, precious little agreement on whether such a pattern exists or if it does exist, how at present it might be defined. There are indications that some adults who have suffered long term reading disability do often share other problems, such as poor memory or poor organisational skills, but whether this could be used to redefine dyslexia seems, on the evidence, problematic.
So what do I think after all the research that I have done? I am tempted by the definition in View 3, that dyslexia should be used to define children with the severest problems. However in the end I think I would come down in favour of View 4, reserving the term ‘dyslexia’ for the 1-2 percent of children, whose problems, on present evidence, are unlikely to be resolved by even the latest ‘state of the art’ school teaching. It would be a rigorous definition and focus attention on those who suffer most. They need all the help we can give them.