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

[MumsnetGuestPosts]

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.”

[HughJarrs]

Despite this being presented as a head to head argument I don't think the two arguments here are diametrically opposed; they both agree that there is huge variation between individuals and their learning needs so a diagnosis of dyslexia is not a cure-all. There will always be some people who see a medical diagnosis as a justification and others who see it as a cop-out

I don't have much experience here but have always wondered if some of the strategies used can make things worse in the long run by making life easier rather than teaching learning and coping strategies. Just as an example, will a young person always allowed extra help and extra time at school cope in the workplace where they get no extra support? This does seem to be the case with one of DS's friends

Ultimately I suspect there is truth on both sides and what we need is diagnosis and treatment that is more individual and holistic

[HPparent]

Hughjarrs, I have a dyslexic daughter who has extra time and the use of a laptop in exams. I think exams are so far removed from day to day work as to render your concern rather meaningless. I have dyslexic colleagues who use specialist software but whose work rate is the same as everyone else. I used to work for a very high powered successful man who was dyslexic, he could not spell or scan text, but he was a visionary who was well known in his field. I think his gifts were because of dyslexia rather than in spite of it.

For the reasons that Lisa states, the dyslexic label has been of a great help to my daughter rather than believing herself stupid. We were lucky in that we were able to pay for specialist teaching to enable her to catch up and she does very well academically. I think testing alone is pretty useless, all affected people need to be able to access good quality teaching.

In my daughter's case it wasn't just reading difficulties, the educational psychologist described her phonological system as not working properly, she had difficulty with some sounds as well, but those to do with language as she has perfect pitch musically. The difficulties seem to run strongly in a branch of our family.

I have never come across a "slow" child being labelled dyslexic. I do however know several children who I suspect are dyslexic but undiagnosed, not able to access specialist help and therefore achieving less than their potential.

[ReallyTired]

No child on earth deserves the label of "stupid". There are lots of issues that can cause an otherwise bright child to have reading difficulites. For example glue or eyesight issues. However there has to be a balance between assessing children and spending money on extra tutoring. Both high and low ablity children deserve intensive help to master the skill of reading. A bright child with reading difficulties often benefits from the same interventions as a less bright child.

I feel that profoundly deaf people who struggle with reading should be allowed extra time in exams. It is unfair that profoundly deaf people with reading difficulties are not given parity with dyslexic people.

[RaRaTheNoisyLion]

It is if you're dyslexic right?

Though there are probably too many assumptions about what it means.

My Dad was severely dyslexic but got a first degree in a specialist teaching subject and never had trouble reading or writing. His logic was spot on too, but his organisational skills were awful.

[mymatemax]

until all schools have fully imbedded individualised learning styles across the curriculum for all children then having a dx (whatever the dx) is helpful.
Its as if it gives permission for the teacher to teach outside of the currently recognised model
It allows the teacher to look at the child and apply different strategies that can help that child progress and reach his potential.
Sadly with large class sizes and the demands placed on teachers and schools there is very little opportunity for a child to receive the support they need without a dx or recognition that there is a specific learning difficulty
I don't think its so much if a dx is beneficial but more that the education system of teaching en mass and the one size fits all approach doesn't cater well for those that don't quite fit the standard model.

[Best1sWest]

Lisa's experience is almost identical to ours. Thanks to a brilliant teacher who took our concerns seriously and agreed that my daughter should be put forward for testing when she was eight, she got confirmation that she was dyslexic and it transformed her into a confident child overnight. She got support all the way through school and is now approaching her finals at university and on course for a good degree.
Having got a diagnosis for our daughter also helped us to be taken seriously when our son showed similar problems at school and he had additional support from Reception class onwards.

It is a pity such help wasn't available for my DM 70 years ago as she clearly shows symptoms of dyslexia and although she has achieved a great deal in later life, I want to cry when I think what opportunities she was denied and how far she could have gone if she'd had the help my DCs have had.

[EATmum]

My DD isn't dyslexic, but does have reading difficulties. In getting her tested for dyslexia, we were able to better understand where she needed additional support, and the school have been brilliant at using this information to support her - and she has just come off the IEP that she was put on at that time. So I would argue that it is the better understanding of the individual need that is important, and making that available to all (at £500 a go, it's not an option for many people) who need it. I am so pleased that we got her assessed when we did.

[nooka]

My ds's EP report said he had specific learning difficulties and explained where they fell. Not that that got him access to any help with his difficulties at school because he wasn't far enough behind, they gave him behavioural interventions instead. That's got very little to do with the use of the term dyslexia though, and much more to do with limited resources.

Of course it would be great if reading was taught better in the first place and all children who struggle were given appropriate support. We had to access tuition privately and were lucky enough to access a specialist synthetic phonics tutor (from a recommendation here) who in short order turned things around for ds. Of course it would have been much better if he had been taught better in the first place (he was in the last year that used mixed methods) and not got incredibly frustrated, but the school didn't even refer him to an EP and were quite peeved when we pitched up with his report.

The key to me is the support, not the diagnosis, but for some people the diagnosis is what unlocks the support.

[mummytime]

I like the Dyslexia label as it helps give a vague idea of the kind of difficulties my DC have in 2 seconds rather than a 10 minute lecture. Dyslexia does not give extra times in exams, you need evidence from separate tests and "usual working", so the same would hold for deaf students.

I also think the label Autistic doesn't begin to really describe an individual's needs or abilities.

If we were starting afresh we would probably use different labels and groupings.

[Nexus6]

I have recently been 'diagnosed' as dyslexic. I had to pay around £200 for the test. I had the test whilst studying at university- I have always struggled with spelling and writing skills for the whole of my school years. I needed extra tuition in schools where I was put with a mix of behavioural issue to just dyslexic children, I found that it made me apathetic towards learning but as I got older and had new teachers I realised that I enjoyed the work and was in fact, rather good.

Over the course of my secondary school years I went from the bottom set to the top set. I still had issues however, luckily, my teachers saw I could do the work. Not once was there talk of me being dyslexic.

University, I found is the best form of teaching. Allows minds to explore the world by using reason and debate. I however was finding I was 'too slow' to write ten pages of essay style answers in the exams so it was suggested to me by a teacher (in my final year, no less!) that I may be dyslexic. I was encouraged to do the test that found me to be moderate to highly dyslexic however, I had extremely well developed coping strategies. I was then allowed to do my exams on a computer and also had an extra half more time or so. I came out with firsts all the time that year. I had been a 2:1 before this. I wish that I had done the test before but I still finished with a 2:1.

I think the labelling of dyslexics has its use in understanding how some people's minds differ. As a pervious poster said, it takes less time to explain to people the child's 'differences/needs' and for that labelling is useful.

[ancientbuchanan]

Ds is highly articulate and always has been, highly numerate. And hard working. So his primary schools, two of them decided he was stupid or idle. Despite obvious signs . And told him so. Often. And refused to test him. And refused to take us seriously.

His secondary school took one look at him, tested him, and recognised that in specific areas he is wildly out of the norm. He walked tall out if the ed psych.

But damage has been done. He hates reading and associates it with failure.

The label has helped him and his school put in place strategies to help and has rebuilt some of his confidence.

The negligence, idleness and slovenly thinking of both his primaries let him down. They know better.

I'm in favour of training more schools to recognise the signs and support, and retaining the level. The prof's view is ok if schools took action without labels.

[Julianelliott]

Reading the replies has been very interesting. I think that some correspondents confuse 2 issues .. the value of the label for an individual and my point that it is the conceptual basis of this label that is highly problematic. Believe me, many diagnosticians have only a very tenuous grasp of the scientific literature. That is why, for example, that the IQ discrepancy model is still widely used. It is important to recognise that a label could be wholly lacking in scientific credibility but still have a powerful effect upon an individual.

One correspondent states that s/he has never known a 'slow ' child be labelled dyslexic. This exemplifies the problem as complex reading disability affects the full range of IQ. Thus, dyslexia, if it is to be used, should be employed for more AND less able individuals.

Many arguments are based upon the fact that the label helped problems to be taken seriously. However, this approach means that the very real problems of many children who don't get such a label will not be addressed. We need a system that captures the needs of all children with reading disability from a very young age. We need to give up the use of this term, make sure that children with problems are identified appropriately and get things right from first principles.

[nooka]

I am sure that we would all agree that it is very important to 'make sure that children with problems are identified appropriately and get things right from first principles'. Given that for most of our children things weren't right very early on and that many of them were failed by schools who didn't want to help we would welcome such an approach.

However I'm not really understanding why 'giving up dyslexia as a term' would help. Are you arguing that it's much too broad and it would be better to focus on the specific difficulties presenting, or that the children who do get a diagnosis get an unfair advantage over those that don't, or that because there is a tendency to wait and see and not diagnose early enough school don't intervene early enough?

For many of our children there was no help provided. In my ds's case that was because there were children struggling more than he was and that's where the money was spent. His diagnosis simply meant his teachers were a bit kinder to him and he understood that his difficulties were not because he was stupid/lazy etc, and for us as parents it pointed us in the direction of the right sort of help. I do wonder if ds had been taught better in the first place if the whole issue could have been circumvented, but from what I see on education threads here phonics are still not consistently taught well, so children with his issues will still be struggling. I'd not want to take away one thing that can help before things are right, and I'm sad to say I don't see that happening in the near future.

[grants1000]

It's all pot luck, you get a diagnosis from school and only if the school your child is at are set up to and understand their needs, you can get some help. Schools hands are tied with budget and time constraints. If you get teachers/s and/or TA's who are prepared to go above and beyond to help your child then great, if you don't then tough.

My 11yo DS in primary school who was diagnosed dyslexic in Y2 had teachers throughout primary school who said things like "I don't know what to do with him" to a TA behind twice a week for a year to take the time to help him.

You can debate the benefits of a label all you like, but what happens on the ground in schools on a day to day basis is what matters and as I said before the varies wildly from school to school and teacher to teacher.

My DS has 2 years of weekly tuition at Dyslexia Action (paid for my us) and a dyslexia tutor twice a week in Y6 (paid for by school - which we had to fight for) Did it help? YES! Because they knew what he needed support with. His spelling is still poor, he asked me how to spell 'eye' the other day, but can spell words like 'because' and 'yesterday' due to well versed mnemonics. All the help he got and continues to get at school give him confidence, reassurance and the ability to be able to do his school work, without it I know he would be years behind. He know uses dictation software, a laptop in lessons and is learning to type.

So the label works, because those on the ground day to day and parents are not stupid and can differentiate between pupils and needs and if you are lucky enough have teachers who just help. He's never been teased or been called stupid, it's 2014 not 1975, you viewpoint needs an update! Yes it can be incredibly hard and frustrating for my DS but he is always engaged and motivated with his school work, he finds school stimulating and loves to learns, he also knows what his difficulties are and what strategies he has to cope with them.

As a parent you have to push and push and do stuff yourself, do not rely on any 'authorities' to come swooping in with a truckload of help; not going to happen. So you can either sit back and do nothing or fight, investigate, try new things, speak to others, get details of new ideas and approaches and try them to see if they help/work. Time will not wait for your child as they move through the system, YOU have to help them.

[grants1000]

And I am so annoyed by the name of the blog 'Blessed are the Cheesebrains" is it supposed to be ironic/ funny? If it works for you the author then fine, but I think it is a horrible way to describe someone who is dyslexic.

[grants1000]

Professor, what is this marvellous approach or do we have to buy your book?

My DS can read but can't spell, so according to you he's not dyslexic because it is to do with decoding words; dyslexia is not just reading difficulties.

So what is he then? Does this make me a lazy parent happy with the label, setting him up for a lifetime of failure and despondency? No evidence of that so far.

Most parents I know see it as an umbrella term with many sub categories that each need to be addressed for each child; I think you need to give parents and teachers much more credit than you are doing. You seem to think we are all relieved with a dyslexia diagnosis and sit lazily back to watch and wait with little input. This could not be further from the truth!

Will I buy your book? No because from your OP it reads as if you are light years behind what is going on in the classrooms and homes of today, because the early detection and tailored response has already been happening for years.

[grants1000]

So what do you do with a child with reading, writing and spelling difficulties Professor? I cannot see an answer or solution from you.

Dyslexia is not the right or wrong term, it's a term that acts as a gateway, whatever the word is that highlights children who need extra support, what does it matter? The whole argument is hung up on one word, with this exceedingly old fashioned dogma ie: middle class cop out crap. The debate has moved on. Will changing the term suddenly mean a change in provision? No.

"The diagnosis is everything one could want" Really? You've actually said that? My mind boggles with the sweeping disparaging generalisation.

You can debate the used the word, is it a myth, blah blah blah, meanwhile parents and children with dyslexia and all related difficulties will just crack on as normal getting the help and support they need.

[zirca]

Having spent a decade helping children with reading difficulties, trying to catch them before they become too severe and helping them when they do have a diagnosis, I think the 'dyslexia' label is too wide. To me, dyslexia is when they just can't figure out words, with no underlying visual cause. HOWEVER, a huge number of 'dyslexic' children (and adults) actually have Irlen Syndrome. This causes visual problems with reading and writing, which, once reduced/eliminated through coloured glasses, leave a child who is otherwise able to understand and communicate through print. I have seen almost unbelievable levels of progress once these children have their visual difficulties vastly reduced, as they catch up (obviously with the correct support for this accelerated learning). It is best spotted in Y1, but makes a huge difference at any stage.

I am sure that the other causes of reading/writing problems, are equally specific, and that the general 'Dyslexia' label could be broken down into the actual problems the students face. A diagnosis would then show future educators/employers which SPECIFIC difficulties that individual faces, and how they can help them.

[MojitoMadness]

Yes, the term dyslexia is actually useful. My dd has dyslexia. Before her diagnosis she just thought she was stupid no matter how we tried to reassure her. Now she knows there is a reason for her difficulties with reading and writing she says she knows she's not stupid it's because she's dyslexic.

She also has autism. Before her diagnosis she used to say she was weird. Now she says she's not weird, she's autistic.

The labels help to clarify the difficulties the person has, and help them feel as they're no so different from everyone else, they just have certain difficulties.

[merrymouse]

"Such an approach rules out any need for a dyslexia diagnosis with all its conceptual and operational inconsistencies."

Does it?

Is the idea that with adequate provision at an early age all 9 year olds (to choose a random age) would be reading at a level that was equivalent to their other abilities?

Unfortunately, even if schools were able to provide this, there will always be speople who have a specific difficulty with reading (and writing). 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. Dys: prefix meaning bad, painful, disorder. Lexia: reading. Dyslexia: reading disorder.

Of course it is important to be able to drill down and link dyslexia to a specific cause or difficulty. However, I don't see a problem with having a general word for reading disorder. There are many situations when it is useful to be able to communicate that you or your child has a specific difficulty with reading without going into the ins and outs of the problem with a complete stranger.

[merrymouse]

"Hello, I've booked DS onto the activity course over the easter holiday and I just wanted to warn you in advance that he has difficulty reading"
"?"
"Yes, he has always had a difficulty with auditory processing and in year 1 he had some additional help and….[5 minutes later]… so I just wanted to warn you in advance"
"OK, I didn't catch all of that, but do you mean he is dyslexic?".

[picnicinthewoods]

I can see both sides of the argument, but I do think the term 'dyslexia' is not that helpful when planning any extra help for a particular child. I have completed a SpLD Diploma (dyslexia). I assess and build support programmes for dyslexic individuals & I was told specifically not to use the term 'dyslexic' in my reports.
Yes it does give people a general impression, but ultimately you need to know what specific difficulties the child is experiencing.
I think part of the issue is the sheer amount of children with reading difficulties in schools these days. We should be asking why this is? What can we do to better support struggling readers/writers? The approach currently is far too generic. We teach phonics too early, when children's brains are not sufficiently developed for that kind of instruction. We don't individualise learning enough, we just expect all kids to develop at the same pace.
The system is broken. Use of the term 'dyslexia' is not the worst thing that's going on here, but ultimately it's not really that helpful either.