A cure for dyslexia ... really?

I've already been asked a couple of times today about articles published in various mainstream publications (at least USA and England) about new research claiming to have found somethign that may lead to cure for dyslexia. Here is a link to the Newseek (US Edition) that I'm basing this post upon. You might want to read it before reading my criticism. 

I reserve the right to edit or expand this  - but in order to provide a timely response to something in the news, I'm going to publish this now and perhaps come back to it later. 

First, let me say that if a cure for dyslexia is at hand, nobody will be happier than I! Realistically though, I see many of signs of hype, many reasons for skepticism, and not much that makes me in any way optimistic. I'm going to go through one of the articles Newsweek - US Edition) to explain my thinking.

"Two scientists believe they have found a possible cause of dyslexia, the disability that affects reading skills—and it could be treatable."

So, the first sentence already triggers the skeptic in me. It has all the right caveats ("possible cause", "could be treatable") but sounds like it wants to inspire hope. What I really notice is that it calls dyslexia "the disability that affects reading skills".  It could have defined dyslexia. Or, it could have called it "a disability that affects reading skills". The author of that line chose neither. 

I'd like to provide just a bit of background about the problems associated with the word "dyslexia". For some time, while working for the Calgary Board of Education (CBE) in the role of Learning Disabilities specialist, I made sure to avoid using the term dyslexia when talking about reading and reading disabilities, There was no commonly accepted definition. People used the term to mean so many different things It detracted from building a common understanding of what a particular child might need, rather than adding to the conversation. 

In 2005, Sally Shaywitz, a respected, well-credentialed researcher wrote Overcoming Dyslexia (Indigo writes About the Author  "Sally Shaywitz, MD, is Professor of Pediatrics at the Yale University School of Medicine and codirector of the Yale Center for the Study of Learning and Attention...").  This book must have sold well because it certainly seemed to cause a sea-change in the ability to agree on a common understanding of what was meant by dyslexia - a reading disability with the root cause in phonological processing. This is how the term is now used by many reputable scientists doing psycho-educational, neuro-scientific research. 

For many years, there have been questions as to whether there were sub-types of reading disabilities (e.g. visual versus auditory processing problems). Only phonological processing difficulties been shown to be underlying problems for most reading disabilities. Theories and small studies have occasionally posited visual factors in reading difficulties, but there has never been the same body of evidence as there is for the phonological basis of reading disabilities. 

So when the Newsweek article fails to define dyslexia it isn't a small thing. However, one could surely go to the article abstract to find out what is meant by "dyslexia", right? If you do that (go to the primary source), you learn that the people studied were "adults with normal ocular status, but with dyslexia, i.e. with visual and phonological deficits." Well, that is by no means a commonly accepted definition of dyslexia (visual and phonological deficits). So it seems to me that at the very least, I'll want to know more about how their subjects were selected. Looks to me like they might have picked people to study who had reading problems and some "visual deficits". If that is the case, then it isn't surprising if they then "found" a visual problem. We still don't know from this that the visual and reading issues are causally related. 

Call me cheap, but whenever I don't have free access to academic journals, I don't just pay for anything I might find an interesting read. If I did, I guarantee you, I'd be impoverished to the point of bankruptcy! So, I go through some decision making (and I still haven't bought the article).

First - look at where it is published - Proceedings of the Royal Society B. I don't know about this academic journal - so I went to have a quick look. It is a Biological Sciences journal with an Editorial Board and peer review expertise to match. This is a very good thing if interested in biology of the eye - but the Newsweek article is about a finding related to reading disabilities and possible treatment. In contrast, the scientists who wrote the article claimed (at the end of the abstract) that their work "suggests new implications in both fundamental and biomedical sciences" (not education). 

If we are to think about implications of pure science for treatment (applied science) we should surely be including expertise from the applied side (learning/cognitive psychology, etc.). The Newsweek article is light on this - enhancing my skepticism. A quick search in Academic Search Premiere, Academic Search Elite, Medline, and ERIC, yielded no other articles by either of these authors on the subject of dyslexia. So, I would say that it is unlikely that dyslexia is their area of expertise up to now. None of this is definitive; but it is noteworthy that we don't have clarity of what they mean by dyslexia, nor clear expertise in that topic. 

A quick google search however, indicates that many, many popular news magazines have picked up this story. Why? Perhaps the second link provided in the Newsweek article helps us to understand. A press release was put out by MedicalXPress. So I did a bit of looking. First thing I noticed when I went to that link was that big advertisements were the first thing to see. The first was for a dyslexia related product - a font claiming to make reading easier for people with dyslexia.  I've looked into such fonts in the past. Just recently I had seen another "de-bunking" report, showing no evidence of the claims made for fonts like this. The second ad was for an Orton-Gillingham online tutoring service (Orton-Gillingham being a dyslexia treatment approach or method). 

So, it looks to me like MedicalXPress is an ad based platform for disseminating information. It may disseminate scientific information; but it appears to me to be a profit driven site (I haven't done a ton of digging, so I could be wrong - but there are certainly ads!). That's enough to get my spidey-senses tingling even more than they already were. 

Now it appears that we have biologists, who may or may not know anything about dyslexia who have noticed something in the eye of adults who have some form of reading problem. How many, you ask? 30. Thirty subjects are what this international hype is based on, due to (it would appear) a sponsored press release. Remember, that a sample size of 30 is often chosen because it is the minimum required for some statistical determinations of significant results. Without looking at the article itself, I don't know what kind of significance we are talking about (the abstract is very light on the methodology or results). I do believe however, that on a moral basis, it is wrong to drive all kinds of hope for a cure for dyslexia based on one set of findings. 

Overall, I'm left with an impression of a small study done by people who are experts in biology, not dyslexia who have found something a little bit interesting, which could be something, could be nothing. MedicalXPress who advertise dyslexia products, picked it up and appear to have talked to the study authors.  It looks to me that they wanted a sensational quote such as "Our observations lead us to believe that we indeed found a potential cause of dyslexia." Note that what scientists say is "potential cause". Any correlation found scientifically can perhaps substantiate a claim to a 'potential' cause; but one of the most important rules of research is to remember that "correlation does NOT imply causation". 

I am NOT a biologist, and have NO idea what is or isn't possible with respect to cone cells in the eyes. However, for illustrative purposes of why it is important not to get excited thinking that correlation implies causation, WHAT IF some people with reading difficulties in childhood eventually have some degree of re-arrangement of cone cells in the eye because of their reading problems. Nothing in the abstract of the article suggests anything in the methodology (in this adult sample) that states for sure which way the relationship goes. Again, I'm not saying that this is a probable explanation (it doesn't seem too likely to me - but what do I know). All I'm saying is that this study appears to me to be a LONG way from the exaggerated claims being made in the popular press. 

I have seen this type of thing over and over again. I'll give you two examples. In the 1980s a researcher was interested in a similar theory of asymmetry of auditory processing. He did research suggesting that plugging one ear would lead to better auditory processing / language / reading. It was a "potential cure" for dyslexia. You aren't seeing this cure in use 30 years later.

The other big one is the Irlen coloured lenses which have been repeatedly demonstrated not to have substantiating scientific evidence. All the support seems to come from individuals with a financial interest in associated products. Please remember that anecdotal evidence (it seemed to help my child) is not the same as evidence that rules out other possible explanations for why it 'seems to help some children', such as placebo effects, increased time, increased child or adult interest, etc.

In my opinion, it is cruel to have parents spend time, energy and scarce financial resources to buy products that have a very slim chance of doing any good. When a lamp is described as "magic" in a news release about a potential cure for dyslexia, I am almost 100% positive that there is a profit motive somewhere behind the scenes. Parents are often willing to do/pay almost anything if they think it will help their children read. They want a magic lamp more than anything.

It is to Newsweek's credit that they did not use that line from the news release. But I do think they went to press far too early and with too much naivety in their belief in this as a potential cure. In my opinion, it is the mandate of good scientists, journalists and educators to be selective in what we claim as evidence of effectiveness. To do otherwise is abdicating our responsibilities to know more than the typical parent or consumer. 

In my experience, sensationalized accounts of early research inevitably lead to far more harm than good. 

 I was born a skeptic.... (no this is not really one of my baby pictures!)

I was born a skeptic.... (no this is not really one of my baby pictures!)

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