Guest debate: Is the term 'dyslexia' actually useful?

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Professor Julian Elliott – co-author of 'The Dyslexia Debate' - argues that labelling children as ‘dyslexic’ is not the most effective way to help those with reading difficulties. Many parents, on the other hand, believe that though the system is by no means perfect, it's currently the best way for children to get the help they need.

Following much discussion on the threads, Professor Elliot and MN blogger Lisa Kendrick - whose partner and son are both dyslexic - go head to head on the issue in this guest debate.

Read their posts, and do let us know on the thread what you think.

Professor Julian Elliott
Co-author of 'The Dyslexia Debate'

“Challenging the use of the dyslexia label was always going to be controversial. The discussion around the book I have written with Elena Grigorenko, The Dyslexia Debate - in which we argue that ‘dyslexia’ is a label that holds us back in helping children with reading difficulties - has, understandably, been emotionally charged.

As a former teacher and local authority educational psychologist, I've worked with children with special educational needs and their families for almost four decades, and often, a dyslexia diagnosis is welcome news. It gives the family a quasi-medical diagnosis for a problem that can cause immense distress. The child often finds the diagnosis lifts a weight off their mind - “I always thought that I was stupid, but now I realise that I'm not”. In our imperfect education system, it is a gateway to ensuring that the child receives the assistance, accommodations and resources they need. For parents who are too often unfairly blamed for their child’s learning difficulty, the diagnosis is everything that one could want.

But there's a problem. It’s estimated that between 4 and 20% of people have dyslexia. The huge difference between these two figures alone shows that not everyone can be talking about the same thing. I would urge parents to be objective – tough as it is when it comes to their child’s educational needs – is it really helpful for us to rely on a label that has no agreed meaning? Shouldn't we be looking at alternative ways to help children struggling with literacy?

The term ‘dyslexia’ is used to describe an increasingly vast array of problems and symptoms – rather than its original use for a tiny proportion of people with a severe difficulty in decoding text. Unlike a medical diagnosis (two patients may have the same symptoms – a cough perhaps – but with very different causes and so different treatments), when you’re diagnosed with dyslexia no information on particular forms of treatment is offered. While there are many, often expensive, treatments advertised by commercial providers, the only approach that has strong scientific support is that which focuses upon structured reading tuition.

At the moment, approaches often involve a ‘wait and fail’ element – waiting until problems with reading or writing become so severe that they can be assessed by a specialist with the promise of an eventual diagnosis of dyslexia.

But this delays intervention and leads to gaps in provision for many children who fall through the net. To experience severe difficulty with reading in school is typically to encounter many years of hurt and humiliation. Every lesson is a struggle. Your peers tease and torment you. Some teachers seem to believe that you are stupid. The struggle can be so huge that making any effort at all feels pointless, so you ease off on your studies. To avoid being seen as stupid, you reduce your effort in deliberately visible ways. Then, when you don’t do well, as you obviously won't, others will put this down to a lack of effort, rather than underlying ability.

This strategy is one that I have seen countless times in my work. And it produces a highly negative cycle, as reduced effort can result in charges that the child is lazy. This is a description that has a strong pejorative ring, and one which I don’t think should ever be applied to any child with learning difficulties.

Given this scenario, it is understandable that parents and child are usually relieved to receive a diagnosis of dyslexia. However, in our book, we recommend an approach, supported by research, which involves the provision of help to all children who need support for reading difficulties, as soon as these first emerge. Such an approach rules out any need for a dyslexia diagnosis with all its conceptual and operational inconsistencies.

We need to tackle the incorrect belief that those who struggle to learn to read are stupid. The reality is that there is no relationship between IQ and decoding ability. Some poor readers are very intelligent, and other poor readers are not. Using dyslexia as a means to get around this misunderstanding dooms those without the label to false accusations of stupidity, and in the long-run, obscures the real lesson: that we should keep decoding and intelligence as two separate, largely unrelated, aspects of a child's functioning.

Ultimately, we must consider the impact that earlier detection and a tailored response - rather than a 'one-size fits all' label with no specific treatment options – could have on our children.”

Lisa Kendrick
Mum and wife of dyslexics, who blogs at Blessed Are The Cheesebrains

“We knew our daughter was dyslexic by the time she was 5. We couldn't get the school to take our concerns seriously (because she wasn't working below average and because they don’t like to ‘label’ children) - but we didn't want to get to the point where she was behind and had been permanently put off education. We had her tested as soon as we possibly could, first for Irlen Syndrome (a related condition also known as Visual Stress), and then dyslexia.

This happened when she was 7. Already she'd labelled herself as ‘stupid’, had low self-esteem, and couldn't understand why she found some things difficult that others found easy. At school, she was being labelled by teachers as ‘immature’, ‘demanding’, ‘spoilt’, ‘over-emotional’, and ‘not engaged in her own learning’. This was very different from the mature, quick-witted, confident child we saw at home.

She was clearly struggling with school, and was permanently tired and ill. Her attendance fell to around 80% - the level at which alarm bells start to ring at school – and yet still they didn't consider that there might be an educational problem.

After the diagnosis, everything changed. Now aged 10, and preparing for SATS and High School, she enjoys school. She’s a confident learner and excels in most areas. She understands that her brain is structured differently to most other people, and that that means she learns in a different way. She knows that along with the 'difficulties', she has huge advantages in some areas.

Professor Elliott is right when he says that a diagnosis doesn't necessarily lead to the best treatment for children – but that’s a flaw in how schools understand and deal with learning differences, rather than in than in the diagnosis. What the diagnosis did was allow us to work together to find the best ways for her to learn, and support her as and when she needs it. We know that her key areas of difficulty are with concentration, short-term memory, and auditory processing, so when she says she can’t remember - she really can’t. And we know when to step in at school when she’s unfairly punished for these and things like ‘not doing well enough’ in times tables tests. We also know when to just shrug it off and have a laugh about it.

Thirty years earlier, my husband was thrown out of school at the age of 7. The teachers said that he was ‘retarded’ and that they couldn't teach him. His mum fought long and hard to have him tested and diagnosed with dyslexia, even though at the time, his local authority didn't recognise the condition. He left school with a reading and writing age of 6. However after getting coloured glasses at 18 (for Irlen Syndrome, rather than dyslexia) and completely by accident discovering that he had a natural affinity for and understanding of computers, he went on to get a First at university. He is now a successful entrepreneur and businessman, and is one of the cleverest people I've ever met.

That's why, this week, I signed a petition calling for the Government to allow testing for dyslexia on the NHS - it's the only 'additional need' that isn't. I do agree with Professor Elliott that, to a certain extent, dyslexia isn't the right term to use. Anyone who knows a dyslexic can see that trouble with reading and writing are just a symptom, rather than the defining characteristic of the ‘learning difference’. And the current testing isn't particularly scientific, either. But ultimately, it’s all we've got at the moment.

I welcome the debate, and have no doubt that in the next few years our understanding will evolve - and so will testing, and how we define dyslexia and other brain differences. And I would very much welcome a new way of defining dyslexia as a positive rather than a negative - in the same way that paralympians are now defined by what they can do, not what they can't.”

As a teacher and an SpLD qualified SN teacher, who carries out private teachers' assessments for SpLD, I think there are some flaws in the argument for Prof JE, but above all I think he is splitting hairs over his 'definition' of dyslexia.

Dyslexia has always been regarded as a spectrum, just as someone might be severely short sighted but need a different type of lens to someone who is slightly short sighted. But they would each be said to be short sighted whether a little bit or a lot. Surely it's the same with dyslexia? You either are or you aren't, but the extent of your problems vary.

Many psychologists who assess children for SpLDs, grade them on a scale of mild-severe. This is shown as a letter ( ie A-D) on some assessments. This gets round the percentages 4-20% which Prof J talks about.

The analogy with a cough is rather silly. Your dr may diagnose you with a tickly cough, bronchitis or pneumonia- they all include a cough, although the treatment differs. So the teaching of dyslexics differs- some learn visually, others more aurally, but others more kinaesthetically. There isn't one-size fits all teaching for anyone with a SpLD and maybe Prof J is missing this point..???

Of all the students- aged 7 to 70- I've taught over many years ( more I think than the Prof as I am almost retired) not one person has regretted having the label of dyslexia. It's made them understand they are not stupid- I've tutored adults with PhDs who are dyslexic- and it gives them an understanding of why they struggle.

I think it comes down to semantics- call it dyselxia, call it an SpLD, call it whatever- it doesn't matter- what is important is a diagnosis of whatever 'it' is, and the right kind of teaching.

The new phonics test is one step in picking up children who struggle, there are several computer screening programs that can be used in schools too at an early age, testing phonic awareness, and synthetic phonics is the way that SpLD teachers have taught for years- so this should benefit all children.

Dear merry mouse....no not all 9 year olds would be reading at the right level but it should be possible to identify all who are below this level and appropriate resourcing should permit the best forms of intervention, that we know of. We don't need to identify a subgroup as dyslexic to effect such a system. Sadly, some will not be able to catch up given current knowledge about what can be done. You don't really seem to understand, however, that the dyslexia term is used by different people to refer to different problems ( and aetiologies)

Dear Mojitomadness.. So do you think that kids with reading problems who aren't labelled dyslexic should be considered to be the stupid ones? If you say no to this question, you're seemingly saying that any kid with a RD should be considered bright.. And this would rule out the supposed value of the dyslexia label. If you say yes, you 're using a discrepancy model which has been universally discredited. The reality is that intelligence and decoding ability are uncorrelated so we can make no assumptions about a child's cognitive ability on the basis of their reading skill. Children should not believe themselves to be stupid on the grounds of their decoding difficulty. A dyslexic label should not be needed to ensure this.

No a dyslexia label should not be needed to help children understand that they are not stupid, or to get tailored help but the problem is that as so much pressure is put on primary age children to read if you are one of the children who find it very very hard then without a label there is zero help or perhaps quite inappropriate help. Even with a label there isn't much available, but at least there are some signposts for parents to learn more and try to access specialist help.

Plus as others have said it is easier to tell people that you are/your child is dyslexic because people understand what that means. So when your child is faced with say a quiz at cubs they can legitimately ask someone else to write down the answers for them rather than knowing that even though they have the information in their head they won't be able to write it in such a way that anyone else can decode it (so why bother trying?). Or at secondary school they can use a computer to type essays and get the marks they deserve due to the quality of argument and backing information instead of giving up or perhaps scraping low passes.

I've no issue with starting to introduce more subtleties into the diagnosis, but so long as there are struggling children removing the label that right now does help and replacing it with ?? isn't likely to be embraced by parents who have often fought very hard to get any help at all.

I am quite willing to believe that if all children were taught how to decode really well there would be less that needed to be retaught (as effectively my son was) but that seems a long way off to me.

Oh and I don't think that any child should be labeled 'stupid'. Just because my son's difficulties can be described under the dyslexia umbrella doesn't mean another child who struggles for a different reason should be called stupid, or shouldn't have a similar right to appropriate assistance.

I have two daughters with Specific Learning Difficulties, both with different problems on the spectrum, as well as a brother who is so severely affected that like Lisa's husband he was diagnosed even back in the 70s (and like Lisa's husband has gone on to considerable success but only after a miserable school experience). I am pretty sure I also share the same issues with working memory and processing, I was regarded as lazy, dreamy and chaotic all through school, whereas I just remember being bemused that other pupils could respond to tasks that required rote learning and memory, could maintain concentration on what was being said, and order and articulate all the ideas that were spinning around their head quickly enough for them not to sound daft or could remember to rule their margins and generally organise themselves. Thankfully I discovered at university and in my career that I had other intellectual skills that more than compensated but I still carry with me a deep seated insecurity about whether I am, in spite of all the evidence to the contrary, after all just a bit thick

I don't argue with Mr Elliott in so far as when my second daughter was slow to learn to read she was lucky enough to be at a school that intervened at 6. Though she was too young for a formal diagnosis they advised that whether or not her problems came within the label of dyslexia the approach, using different a combination of teaching styles, would be the same. Now 18 she still is very grateful for the foundation and all the skills they gave her then.

However I am not clear what Mr Elliott proposes for older children with specific learning difficulties. You don't grow out of them, or get cured by appropriate intervention that enables you to develop basic literacy skills. You carry on facing difficulties. My 18 and 21 year old daughters are still getting help with those problems. Indeed the help that my daughter and niece have had at university has felt like the calm after the storm, with processes in place that access them the diagnosis and support, it has felt like I could finally leave them to educationalists who actually really do get them.

How I wish I had had all the support my daughters have had at school and university to help them achieve their potential, not just support with different learning styles, coping strategies, extra time and technology that helps compensate for memory problems but also understanding exactly where their difficulties lie and their strengths and weaknesses. And this has to a lesser or greater extent come as a result of this pushy parent brandishing an Ed Psych report and making sure they got it, if not at school then at home. We are quite clear that getting a diagnosis means you have to work harder than your peers to achieve your potential, and probably your parents have to work harder too. I don't buy the "a label begets lazyness in the child" argument, because surely if there is no label then there is a danger that the child is demotivated and left thinking there is no point in struggling on. To be frank in my experience dyslexia denial, which doubtless will fuelled by this research, in a teacher is an excuse for them to stick with traditional teaching styles and ways of assessing pupils that fail to enable those of their pupils with specific learning difficulties to achieve their potential, methods which incidentally probably also disadvantage other children in the class who don't have a brain wired in quite the right way.

Shootingatpigeons my nephew is just coming to the end of his university course and has had excellent support at university too. I know of a few people who only received diagnosis (and thus support) at university having struggled and learned coping skills through school but never achieved quite their potential until very late. It seems to me crazy that so much support is available so late and so little is provided early. Not that there shouldn't be support at university, but it seems unfair that children who had the potential to reach university and who would have benefited from that support undoubtedly never make it there.

In the last two generations all but one boy in my family have dyslexia/SpLDs, and I am fairly sure that my father and aunt also have similar traits (both very late readers and my father's writing was almost completely indecipherable - luckily he worked in a world where dictation was the norm). One of my cousins sees his differences as an advantage which was very helpful for my son as not only could he empathise with his struggles at school but he was also very positive about their shared creativity and lateral thinking. Schools can be horribly one size fits all.

Julianelliot. Yes I do understand that different people use dyslexia to refer to different problems. That is why I said "I think dyslexia is always a symptom of some other difficulty (e.g. problems with auditory processing, visual processing). However, to limit dyslexia to a particular difficulty seems to overcomplicate language."

As far as I am aware, children do not get a dyslexia diagnosis at KS1 when phonics is generally introduced in this country, so in theory the word shouldn't affect them one way or another. All children are supposed to receive tailored support according to their abilities and difficulties from an early age. Unfortunately sometimes the practicalities of running a classroom seem to get in the way when those abilities and difficulties are more extreme. That doesn't mean that the intention and decades of policies aren't there already.

You seem to be arguing that dyslexia is a label that limits treatment options because it is used too widely. It depends how you use the label. If you see dyslexic and think "Ooh dyslexic, you must be very creative and good with your hands, you must be good at woodwork!!!" and use the same blueprint to treat all people with dyslexia it does limit options. If you see dyslexia and think "Specific learning difficulty: reading" and then use strategies that will help that individual, it is just a shorter way of saying "Specific learning difficulty: reading".

I think you are focusing on narrowing down the use of the word dyslexia to a specific group of causes. Of course you should use more precise definitions and descriptions if you are training teachers how to help people with dyslexia or actually helping somebody with dyslexia. However, that doesn't mean that you have to get rid of a general word that means specific learning difficulty with reading.

Similarly, when somebody asks where I live, it is useful to be able to say the UK or London as appropriate without providing my whole address every time.

merry Yes my understanding is that it is not possible to make a diagnosis in Key Stage 1. My daughters were first diagnosed ten years ago and at that time were labelled dyslexic but ever since their second assessment it has been made clear to us by the Ed Psych that because, with a lot of hard work, we have got their literacy skills to an average level, they no longer strictly speaking fit the definition of dyslexic. That is not to say they do not face substantial challenges as a result of working memory and processing issues, and dyspraxic traits as well.

Clearly in an ideal world then we would not ever need to use the "dyslexia" word, the appropriate support would flow with a precise diagnosis when a child needed it, especially at key stage 1. However I think that what Professor Elliot does not appreciate is that those of us who have specific learning difficulties or parent children with learning difficulties do not live in that ideal world. My niece's friends who graduated as teachers 2 or 3 years ago were appalled, made aware by the challenges she faced, to receive just two hours of lectures on SpLDs. They felt it left them ill equipped to respond if they encountered a child who faced those challenges in their classroom, let alone identify the issues and come up with targeted support. The extent to which schools address that in subsequent development and with appropriate education strategies and teaching methods is very patchy indeed.

I don't know a parent of a child with SpLDs who has not had to deal with the consequences of not just ignorance but outright denial. I was lucky to encounter a proactive SEN teacher at my DD's first school but the Head at her next school when she was first formally diagnosed at 8, refused to believe she had learning difficulties because with intervention at her previous school her reading and spelling were actually better than the children who had been at the Head's School from Reception and did not have the benefit of targeted intervention "children go off and get these labels, don't expect it to make any difference, we have pupils who have more need of extra help" she said, completely oblivious to the fact that her reports were outlining a classic list of traits. And so it has gone on "she must be cured" from an English teacher etc. etc. Now we have education strategies being introduced that seemed aimed at undoing all that has achieved in the last forty years, since my brother and I struggled at school, with greater focus on assessment methods and regulations on extra time that will make it harder for pupils with SpLDs to demonstrate their potential and get to university where the environment is so much more facilitating. All it seems to pander to a populist view peddled in parts of the media that parents and Ed Psychs are complicit in some sort of massive lead swinging project, hence the reason the Daily Mail, Rod Liddle et al fell on Professor Elliot's report like vultures for "expert opinion" to confirm their prejudices. What I wonder does Professor Elliott think of that? Does it not concern him he may be helping undo what has been achieved from the pinnacle of what many parents who have to deal pragmatically with the real world regard as scientific pedantry?

A dyslexia label isn't perfect either, we have had to stand up for our daughters in the face of all sorts of stereotypes, that they shouldn't do MFL, essay subjects etc. etc. etc. However at the end of the day it is a "label" that at least opens doors to a dialogue and provides you with some power in that dialogue.

Since Professor Elliott is apparently not going to come back and debate, writing us off as a bunch of "middle class pushy parents"? I emphasise that my arguments are rooted in the unfairness of a system that does not give the right targeted support to all children, not just those who have pushy enough parents.

However I think this is a very good response (and I just learnt about the link between dyslexia and allergies, another family trait....) from a Professor of Neuroscience at Oxford Medical School, which backs up my point that we are not just talking about early problems with literacy but a lifetime of coping with (and also benefitting from) brains that work differently www.dystalk.com/talks/90-why-dyslexia-does-exist

We've had the same issue at secondary shooting, ds's reading is now so much improved that when he was reassessed (by the equivalent of a SENCO) they said that although they could see he was still significantly underperforming with his writing skills his reading was too good to be 'dyslexic'. Luckily his teachers have all agreed that he can use a laptop simply because they couldn't read his writing, but this year one of his English teachers has decided to introduce weekly spelling tests (at age 14!) so of course he is routinely failing them again...

Just for interest, this is his third school system. In the UK he had behavioural interventions only (not behind enough) in the US they wanted to get OT support for his handwriting (we weren't there long enough to receive it) and here in Canada he had some one on one with the SENCO, and some G&T extension stuff. They've all recognised that there was something different about him, but the only effective help came as a result of a private EP assessment and private tutor that we accessed as parents.

nooka yes, we were lucky that the help my DD had at 6 targeted her reading writing and spelling but whilst with the tools she was given she can spell in a way that is comprehensible neither she or I would stand a chance in any test of accuracy or memory. And her writing is painfully slow, tenth percentile.

However with a lot of hard work she had 5 offers to read English at RG unis, she may struggle with spelling writing etc but in terms of having verbal reasoning in the top 2% and her ideas and emotional intelligence it is an opportunity she deserves. She almost lost extra time in exams, which would have almost certainly have lost her this opportunity, as a result of changes which have now been introduced here which have defined one arbitrary cut off for processing and working memory scores and if those scores are average or above (and to be below average I gather you have to score at the 14th percentile or below) you are not entitled to extra time. If they are below average then you get extra time irrespective of whether you are actually of below average ability. Presumably. Professor Elliott supports those changes though even the exam board say they disadvantage dyslexics. Whatever the scientific pedantry these bright students have a lot to offer, enlightened businesses and other organisations such as the MOD go out of their way to exploit the diversity of talents amongst those with SPLDs and autism realising the benefits, those with SpLDs are overrepresented amongst CEOs and senior managers and in surprising places eg amongst historians (yes dyslexics can write essays). However to get there they have to overcome the hurdle of a school system that seems increasingly to be getting in the way instead of facilitating them to achieve their potential.

All I can say is hang in there and keep supporting your DS

"Even the exam boards say they disadvantage bright dyslexics." Spot the useless proof reader ....

Sounds very stressful with the exams, glad that your daughter looks to have got through the final hurdle (at least to have her difficulties acknowledged and adjusted for) I hope that she gets the place she wants at university.

We live in Canada now and there is much less reliance on exams and much more on continuous assessment. Which has it's downfalls too, but ds seems to be doing well now and is very motivated. At the moment he is really focusing on programming, but I've a feeling he might follow the family interest in history/politics later on. He is also taking Japanese as his MFL, he's actually quite good at languages which is interesting and I'm curious to see how he does with a non phonetic written language.

My brother started using voice recognition software a few years back and says that it's not that bad at all, so there are options for those who struggle to write. To me it was the reading difficulty that was the biggest issue as so much learning is locked up in words.

I am interested to read all the responses. Most operate along the lines of , "....my child received insufficient support" or "....their other abilities were not recognised until we got the diagnosis". I understand why a diagnosis of dyslexia ( irrespective of its scientific credibility) would serve a valuable function and certainly would not be critical of parents who pursue this line.
The problem for those of us who are concerned with the development of effective systems for all with learning difficulties is that clinical terms such as dyslexia need to have a scientific basis and be used consistently. As I show in the book (endorsed by Gordon Sherman , a former President of the International Dyslexia Association as a ' tour de force' - a statement which will surely puzzle many in the dyslexia world who have not read the book) the use of the term is highly problematic. From the perspective of the concerned parent, however, this is far less important than gaining services that may help their child. This is certainly understandable but it does not mean that the label is legitimised on the basis of what it can bring