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.

My son is dyslexic and has good and bad days reading. On bad days a yellow overlay just helps to stop the words moving around. He doesn't need it all the time, but on days he's tired it really helps. As mum to a kid that struggles, I don't care what the science days, the overlays help and if it makes it easier for him then he can have one. He refused glasses as he doesn't need them all the time.

This is how I see text:
www.google.com/search?client=firefox-b-d&q=irlen+syndrome+simulation

I had more sympathy for homeopathy after reading Ben Goldacres book - I have no doubt that it is a placebo effect (and some regression to mean) but the placebo effect is a real effect (still don’t think the NHS should spend money on it). You do feel better if you take a placebo vs nothing, even if you know it is a placebo. So coloured overlays may be both a real and a placebo effect. Don’t spend much money on it though.

This is a real thing - I actually have it - it was called scotopic sensitivity syndrome when I was a child. Diagnosed by an optician initially after I told my DM that the reason I refused to read or do any work at school about how words were moving and running away from me (she thought I might have a brain tumour with all all the strange stuff I was saying I was seeing) I ended up with pink filters a few months later (pretty sure she went down the private route to get this sorted so quickly) and went from being assessed as having a reading age of under 3 years to a reading age of 11 years in the space of a term. Now I am just one person so I can't comment on mass studies by it completely changed my life. I avent actively thought about it for years and dont wear filters now because I have learnt to see through the condition but it's still their especially if I am tired. PM me if you have any questions.

And again - if my personal experience was just a placebo effect - I don't really care - it worked for me. It's just coloured plastic sheets/or tinted lenses in glasses. Can't do any harm to explore it

I got Irlen glasses on the NHS nearly 2 decades ago. I had the coloured overlays etc. They stopped funding it because it's expensive not because it's not real.

I wouldn’t call it ignorance, Solstice - the whole point of the thread is questioning the scientific validity of something. Surely it is more “ignorant” to unquestioningly accept something for which there is little evidence?

It is completely inappropriate for an unqualified person to offer an armchair diagnosis. This can lead down the wrong or narrow diagnostic path.

The on-line tests are also not appropriate to diagnose.

If staff suspect your DD of having a learning difficulty, then your best course of action would be to find an Ed Psych who is qualified to test, score and diagnose.
Or, a Clinical Psych with specialty in SpLDs.

Your DD could have a number of difficulties ie

• dyslexia - would benefit from dys friendly font and spacing amongst other measures
• tracking issues - would need to see a behavioural optometrist
• poor muscle tone in hands
• dyspraxia
• other medical condition etc...

An appropriate qualified professional is key.

She had green pads to write on and she find writing equally difficult on green or white backgrounds.

Is it hand writing - then look at right from the start or if older speed up - slopes and pens and grips can also help.

If it's spelling - apple and pears

We did tend to find it could end up with we do this group/intervention so all all problems we encounter look like this solution rather than looking what the specific problem with our child was - though that could just be our children's schools.

My rule of thumb is if the NHS don’t fund it, it’s because it hasn’t been proven or there is no good evidence to suggest whatever treatment is better than any existing.

It may be, as pp have said, the nhs don’t fund the glasses as a sheet of green paper is equally effective.

But the NHS do (or should) constantly review their treatment protocols and best practice. Whether funding allows that is a different matter, of course.

@Shoppingwithmother I was talking to the poster who said 'it sounds a bit woo-ish' - even after all the other posters talking about personal experiences of having it.

IdaDown, the ed psych that works at her school doesn't assess dyslexia, they don't have time, they have more urgent matters to attend to. DD does get extra help with her writing, she has difficulty with hand writing, spelling and copying things out. I try to help her at home to practice writing, I'm not sure how much good any of it does.

Thank you for the links bigKiteFlying, I will check them out.

It's pretty obvious to people who have it that it's real! So if these things help people who actually have it - that's what matters surely? Not whether it SOUNDS strange to people who don't understand it?

BTW when they tested me for this (IQ test for suspected dyslexia) I didn't know scotopic sensitivity was a thing, or know the relevance of the overlay tests etc so no reason for me to have any 'placebo'

I had my child assessed for dyslexia at Bloomfield Learning Centre in London - this wasn't offered by the school at the time so we paid privately. Once we had the assessment they also recommended that teachers write on the white board in purple rather than blue or black, this helped the writing from moving or becoming fuzzy - this was met with negativity from some teachers who stated they didn't have a purple whiteboard pen - so even though pens were provided by the school my child took them to all lessons so the teachers couldn't use this as an excuse. Hopefully these small things (that don't affect the learning of other pupils) are better taught to teachers now. At the time my child encountered quite a few issues with certain teachers who couldn't or wouldn't accommodate small changes and treated my child either like an imbecile and talking down to her or by brushing her off - luckily she is quite feisty and was able to stand up for herself and potentially other pupils and state clearly and repeatedly that changing the colour of the whiteboard pen didn't affect the learning of any pupils and could assist her and potentially others. She also had a lilac overlay and was allowed to write her homework in purple pen and to change the background and font colour on any computer - they did have to be changed back at the end of each lesson but we also got a laptop supplied which she could use. I don't really care if it is considered claptrap I just know it helped her and also made her stronger by repeatedly and sometimes forcibly telling teachers that changing colour didn't change anything else in the curriculum.

@Chloe9 the only thing I found about funding for Irlen syndrome treatment on the NHS says it will not be funded because 'no scientific evidence to support the existence of such a syndrome has been found.'

and

'Two review papers and a randomised prospective controlled trial on the effect of tinted lenses on reading ability did not show significant improvement in reading.'

www.enhertsccg.nhs.uk/sites/default/files/documents/Jun2017/Guidance%2037%20-%20Mears-Irlen%20Lens%20Syndrome.pdf

I use purple overlays, they help me, it stops my eyes hurting and the headaches, same way as wearing sunglasses on a bright day does. I did have tinted glasses but have to say they weren't actually worth the cost and annoyed me, because they made everything purple tinted not just the writing.

If the overlays work that's great but I wouldn't personally be paying for eye tests and glasses until you know if the novelty of the overlays is going to wear off and if they are actually making a difference (I've worked with a few children who just wanted coloured paper and said it was helping when there was no improvement in their work at all and they got bored of it after a few weeks) if you were planning to fork out for any testing I would prioritise getting an official diagnosis for the dyslexia as that would mean extra time in exams, extra support etc, which is a lot more useful than coloured lenses.

I guess it might not show improvement in reading speed, but could improve eye muscle pain and discomfort, stress from trying to make the letters stop moving etc?
For me, the visual relief is what is important.

I got referred for Irlens testing by occupational health at my work and I went along with it just to tick a box as basically I thought it was a load of tosh based on the reading I'd done. I did a timed reading test with / without a coloured overlay and was something like 23% faster (the 2 texts were just a load of jumbled words with standardised difficulty). It actually makes a massive difference, I was so surprised!

I feel like an idiot wearing purple glasses at work and only wear them when there's nobody around. It has really improved my reading rate and reduced eye strain though.

I agree with SadOtter. If your child feels it helps, then it helps, but I wouldn’t spend money on expensive glasses unless and until you are sure that the overlay is really useful.

What will be useful is ensuring that there is the facility for her to have the support she needs for exams. That might mean extra time, a scribe or use of a computer instead of hand writing.

Behavioural optometry has some overlaps with Irlens/patten glare/scotopic sensitivity but it’s more to do with exercises. It’s not available on the NHS and also doesn’t have a very strong evidence base behind it. But, again does work for some people.

The danger with Irlens is that it could mask a more serious underlying order, does not prepare students for life beyond the classroom, is diagnosed by people with a vested interest (ie they're selling the overlays) and is not evidence based. Anecdotes are not data. They are stories. Feeling good about helping someone by giving them an overlay is about as selfish as it can get. I teach, I work in a school where 10% of the kids were diagnosed with Irlens, and strangely boys never wanted pink overlays, and girls never wanted blue. And funnily enough, children who demand their worksheets printed in orange or purple never remember to bring their overlays and oddly, can read their phones and computers just fine. Its bollocks pushed by someone who wants to make money by exploiting parents who are desperate from help for their children.

OP do you mean the school have said their tests indicate your DD has dyslexia, but they aren't going to pursue that? And they have advised you to pursue an expensive Irlens diagnosis, while leaving the probable dyslexia undiagnosed?

I'm hoping I've misunderstood!

I have Irlen syndrome.

But yeah - why would you explore something that might help your dd?

You don't have to pay for the assessment, which is expensive. School will have the overlay sample pack. She can pick her preferred colour/s. You can buy the glasses in a range of colours pretty cheaply now.

Biggest issue i had was computer screens - I get migraines from most monitors/laptop screens. Getting a work laptop with an extremely high pixel density genuinely changed my life.

But yeah - it's all made up 🙄 I feel sorry for your DD that you're not even willing to explore it.

Nice to see posts from so many fellow Irlens!

www.abc.net.au/news/2019-06-26/irlen-syndrome-medical-eye-condition-controversy/11218184 don't forget a whole range of dodgy ideas have made their way into schools by so called experts - my favourite being "brain gym" which recommended breathing through the nose because it's closer to the brain and oxygen will arrive faster (um .... lungs, then blood ....)

DS finds coloured glasses and paper very useful. We've only just had the dyslexia and dyspraxia identified since the start of the financial year after he turned 8, but when in y2, his teacher did some initial checks with overlays then we went to the optician.

Halfway through y2, my very bright, astute child was still limping his way through stage 3 books. His teacher couldn't believe the transformation as when a certain colour was placed on the page and he suddenly read fluently for the first time. The overlays allowed her to bump him up two levels straight away and moving on quickly again.

We'd already been to the opticians a couple of times, after he failed the pre-school screening, and in y1 when he couldn't read the board. Both times and at a routine check since, there is nothing "wrong" with his eyes. The optician had observed that he was struggling with tracking and picking up letters from other lines (and presumably had with the pictures at the pre-school check.)

He can cope better in the absence of the tints now, but he has that experience of knowing what letters look like which is a greater advantage in decoding than he had before.

He has a lot of sensory issues anyway and anything that helps him manage life and the education system is a good thing. Getting him up to an age appropriate standard as quickly as possible is a good investment towards his future sucess rather than struggling for years and accruing additional problems with his self esteem.