Irlen syndrome is a load of rubbish?

[GherkinTherapy]

My daughter finds writing really difficult and her school have a dyslexia testing kit, which suggests she is dyslexic (not an official diagnosis).

They have also determined she has something called Irlen syndrome or 'visual stress' which can be alleviated by using green tinted transparent plastic overlays on anything she is reading. The SENCO and various support staff have recommended I have her eyes tested by an Irlen specialist who can provide her some special tinted plastic glasses in just the right colour for her. Given that this is quite pricey and not available on the NHS I did a bit of research on the internet before going ahead. A recent meta-analysis of the data found 'no evidence of treatment effectiveness has been achieved'. It seems any positive effect is placebo.

www.researchgate.net/publication/332205658_Irlen_syndrome_systematic_review_and_level_of_evidence_analysis

And an article in the BMJ saying similar www.bmj.com/bmj/section-pdf/763087?path=/bmj/349/7972/Views_Reviews.full.pdf

I'm not a scientist and maybe I am missing something, but it seems wrong they are pushing an expensive treatment with no evidence to support it's efficacy. I have raised it with the head, but he thinks they are right and I am wrong.

I think the important bit from parietal’s link there is:

“Existing known eye disorders (listed above) explain the findings in patients diagnosed with Irlen syndrome. Further, when treated for these known eye conditions with established therapies, the patients improved and the findings used to diagnose Irlen syndrome resolved.”

Yes there is something wrong with the patients, and there are established and evidenced treatments that can help.

Irlens is seemingly a false goose chase and saying ‘well it could give you a placebo effect so it’s worth trying’ is ignoring that effective treatments also have a placebo effect so are more worth pursuing.

My dd went from struggling to reading Biff and Chip to reading 4 novels in the month after getting filters. She is 10, has been seen by cyps, has ED Psych assessment, strategies listed in a my plan, none of which have helped nearly as much as her glasses. Her teacher is completely stunned by the difference. It's looking like she will finish primary school reaching or exceeding the expected standards, when she has been very behind previously.

She has also not had 1 migraine since getting the filters, which she was getting bi weekly before and baffling her gp.

She's been teased for wearing them, which she is hugely sensitive about, but still it is the very first thing she puts on the morning, which tells me that they absolutely make her eyes feel more comfortable.

When my dd was assessed, we were in the room for 3 hours. It's a very very thorough assessment. It cost £70. She has 7 colours and UV in her filters. She see's everything as clear, not dark or purple.

It's interesting that there is no evidence. I also find it interesting that some pp think children will get extra time if they have filters. My dd was getting extra time before she had the filters, because she needed the extra time. Now she has them, and her reading speed has improved do much, she does not need the extra time so won't be getting it. I am delighted!!

You can get her tested on the nhs specialist optomotromotist do the testinf i think you are being very dismissive you are quite happy for her to use overlats but not get her lenses which are more convenient. 1 of my dds were diagnosed at 15 her glasses changed her life.

Tbf my dc has visual stress which i think is slightly different but the overlays and lenses do the same thing.

Mrsjayy like I've said before on this thread, I was happy for her to try the overlays, I had never heard of visual stress/Irlen syndrome when she was given them. I even bought her a set to try at home, but they don't help her handwriting and her reading is equally fine with or without.

Oh and I can't get her tested on the NHS, not here anyway.

It may we'll be that she doesn't need overlays or have visual stress! However, how would an overlay help with handwriting, as you can't write on it?
Only coloured paper or filtered lenses would help if she did have visual stress.

What is the issue specifically with her handwriting? Is it slow? Does it cause her lots of effort??

Yes, like I said she tried the coloured paper, it doesn't help. I'm going to link to this again;
ranzco.edu/wp-content/uploads/2018/11/Irlen-Syndrome-Position-Statement-May-2018-1.pdf

Someone linked to it up thread.

'There is no scientific evidence that Irlen syndrome exists or that treatment of
reading difficulties with Irlen lenses work

1. Irlen syndrome is not recognised by the medical community or the World Health

Organisation (WHO)'

It also clearly explains why people may feel they are helped by the overlays and lenses.

I'm interested to know if anyone can refute the findings with anything other than anecdote.

I'm interested to know if anyone can refute the findings with anything other than anecdote

I think people are wasting their time sharing their experiences with you.

Are you a genuine poster?

I very much doubt it.

I'd be very skeptical too. Have her evaluated privately and her vision fully and exhaustively examined. One study mentioned in the article below found that in some cases there were visual problems that contributed to the difficulties.

Science-based medicine Irlen Syndrome

Conclusion

Irlen syndrome is yet another example of a medical diagnosis and treatment that was promoted prior to adequate scientific evidence to establish that it is real, and treatments based upon the diagnosis are effective. A quarter of a century later evidence is still lacking, and what evidence we do have that is reasonably rigorous is negative.

The most parsimonious interpretation is that Irlen syndrome is not real. The label is being applied to a heterogeneous group of patient who have many other conditions. Colored lens therapy does not appear to work.

So if you've tried coloured paper and overlays and they don't help she is very unlikely to have visual stress.

So why are you exploring this for your child??

Here's another study....

onlinelibrary.wiley.com/doi/abs/10.1111/j.1467-9817.2005.00275.x

"This study sought to clarify the relationship between visual stress and dyslexia by comparing the reading performance of dyslexic and non‐dyslexic adults with, and without, colour. Degree of susceptibility to visual stress was determined by means of a symptom rating scale. Optimal colour was determined using an Intuitive Colorimeter, which was also employed to assess reading speed under the two experimental conditions. Only the dyslexic students with high visual stress showed significant gains in reading speed when using optimal colour. The use of response to treatment (rather than symptomatology) as a diagnostic criterion for visual stress is questioned, especially when applied to adults, as this may give misleading findings. On the basis of reported symptomatology, students who experience high levels of visual stress are more likely to show improvements in reading rate with optimal colour if they also have dyslexia than if they do not have dyslexia. Although not establishing an aetiological link, these findings imply an interaction between the two conditions with major implications for theory, diagnosis and treatment"

I'd never heard of it either and thought it was made up. My daughter failed the Kent test, came out and said the answer boxes were "whizzing around". I had her privately tested for Irlen, her CAT tests post diagnosis (with Irlen filter glasses) improved by 30% and she is now doing very well in grammar school. She now reads for pleasure for the first time, having struggled with it all through primary school. A friend who is a GP and was very sceptical is now a total convert to Irlen as both her children have it and dyslexia. Btw Irlen testing and glasses are available on the NHS in Scotland, so I wouldn't dismiss it out of hand.

gosh but people are attached to their special labels aren't they?

This is an exciting and new way to stir a hornets nest isn't it? To point out that a label people are attached to has no scientific basis...

This reminds me of the learning styles nonsense. I still meet people from time to time who proudly introduce themselves as kinesthetic learners, in spite of the whole theory having been thoroughly debunked yonks ago.

gosh but people are attached to their special labels aren't they?

Please tell me you don't work in a school??
Read the article I posted.

Who decided that all text needed to be on white paper and white screens? Surely it makes logical sense that not everyone’s eyes will manage as well as they could for another shade seen as all eyes are unique and individual as is your brain that processes what you see

Couldn't work in school for more than 5 mins without getting overwhelmed by non-science based BS-led practices.....

I mean what with brain gym, learning styles and now this? That's before you get onto number bonds and times tables etc.

pookie well quite...I mean the word for people who find it easier to read when the contrast isn't so high is 'human'.

myself and daughter have Irlen Syndrome and the filters are definitely not a placebo effect.
I struggled all of my life with light sensitivity, migraines and many other symptoms of irlen’s but didn’t realise this was a thing until I started to work within the sen field.
irlen’s filters are overlaps of various colour filters which eliminate stresses in the brain. So when you see a person with irlen’s with wearing coloured lenses, the person wearing them does not see any colour.
if you look up Helen Irlen, she was the first specialist to notice the issue and it is called as a neurological condition. Lots of research has gone in to the condition and it would be worth you looking up irlen’s.uk and the irlen’s institute.
assessments aren’t too expensive in comparison to a dyslexia assessment.
our irlen’s assessments cost £100 and dyslexia was a additional £550.
It will be recognised by the nhs eventually; and lots of work is being done behind the scenes for this to be the case in the future.
please don’t dismiss it, because this has changed our lives.

This thread is 3 years old.

Even if it was a placebo effect, the placebo effect is a real effect and people are really helped by it. The placebo effect is NOT no effect.