Anyone have any experiences or Irlen Syndrome?

[HuggingtheHRT]

I'd never heard of this condition until a week ago but I'm absolutely convinced my DS has it.

DS (9) is autistic and has shown light sensitivity since birth. (All the classic signs - distress in bright sunlight, howls with camera flashes, struggles with glare of any kind.) He's a competent reader in the sense that he can confidently tell me what any word says. So I'm not convinced he's dyslexic in the traditional sense. But he finds reading exhausting- rubs his eyes, blinks, complains or tiredness, complains the page is too bright. He struggles to read across a line - he repeats words, misses words. Despite coming out with one of the highest reading scores in his class, Will do literally anything to avoid reading.

Having read the symptoms of Irlens, it sounds like DS. Does anyone have any experience of this - how do you get tested for it and do things like coloured overlays help? How do you know what colour overlays to use? Info on the internet seems to be all US sites so I've no idea how to get the ball rolling here....

Check out of it's available under your local NHS.
Some areas it is and there's no element of selling something that may not be needed.
It's now called visual stress as there was an issue with mears irlen name

While you’re exploring options, these are cheap enough to try out for yourself:

www.amazon.co.uk/Original-Duo-Reading-Ruler-Overlays/dp/B00TDZPYUO/ref=asc_df_B00TDZPYUO/?tag=googshopuk-21&linkCode=df0&hvadid=226587414468&hvpos=&hvnetw=g&hvrand=16087539304405844264&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9044865&hvtargid=pla-422151669113&psc=1&th=1&psc=1

visual stress is not irlens syndrome

My adult students liked the reading rulers linked above as they were a bit more discreet than A4 overlays.

Some opticians offer ‘colourimetry’ assessment which involved firstly coloured overlays and then, if these are helpful, tinted glasses lenses.
I think you would struggle to get a diagnosis of Irlen Syndrome because there isn’t a lot of scientific evidence that it’s actually a thing. Having said that, I have come across many people who swear by their coloured lenses. Worth a try surely as it would probably be quite obvious whether it was helpful or not for your son.

DD was diagnosed for visual stress and, has coloured glasses and reading speed increased by over 50%. We originally tested for dyslexia which she was found not to have but a test for visual stress was recommended as it was very obvious there was something going on. DD described a massive difference and I can see it too when she is wearing them or not (eg can manage for longer with greater fluency etc).

Happy to PM details of the optometrist who is based in Temple Fortune if you need details.

Be careful asking if the words move, my dd photoshopped this image to demonstrate what she sees.
She's 24 and still avoids reading at all costs.

Wrexham university have an excellent diagnosis department.

The adult I know who finds it essential wears lenses that look like sunglasses all the time, indoors and out.

Without them she feels like she's looking into an interrogation lamp, which is understandably distracting.

I'd imagine the effectiveness of the lenses depends on how badly affected you are, and whether it's the only thing impacting you.

I may have a touch of it, but alongside other issues, and not enough to pay for those lenses!

It doesn't exist

It was a purely commercial invention

I have no personal experience but I used to work at an eye hospital and I know the optometrists and specialists there felt that Irlens is a spurious diagnosis. Some patients find the diagnosis and overlays to be helpful (at least in the short term) but this could be a placebo effect. I do recall that staff sourced some overlays purely to stop people paying excessive amounts to private "experts".

Thanks for all of your comments. I need to try and understand the difference between visual stress and Irlens because, as many of you have indicated, there are opticians and NHS practitioners who acknowledge visual stress is a thing, even if Irlens is not believed to be a thing.

@picklemewalnuts I think my son may need glasses all the time too. It's not just a reading problem, it's a constant sensory overload when it comes to light and brightness - which is why I think it's more than dyslexia. If glasses made a difference for him, I would absolutely invest in them just to make his day to day life easier.

@Millicentmargaretamandaholden that would be really helpful. Thank you!

but wearing darkened glasses causes sensitivity to light

hence "slebs" who wear sunglasses at all times can't actually take them off, because they have made their eyes oversensitive

If your son has a vision problem take him to a optician, or GP

Don't mess about with gimmicks

That makes sense, @Nimbostratus100

How are people supposed to cope with over sensitivity to light, though?

The lady I know is hypersensitive to all sorts of things.

I have some related issues and have to be really careful. When you get a pain response to everyday things, it's pretty wearing.

If you are in the South speak to these people. www.dyslexic.org.uk

I took my son there after he was being bullied at school by the teacher (yes, that’s right!) for being stupid or naughty as he was refusing to read. He said the words just moved too fast for him to catch them. He was always rubbing his eyes and squirming whilst trying to read. He’d do anything to avoid it and it seemed to cause him real discomfort.

The researchers at the Dyslexia Clinic said he was not dyslexic, but had visual stress. He was given coloured lenses and it transformed his reading. We cannot keep him out of books now! The initial assessment was about £200 (we agreed to allow his data to be used in a study for a lower fee, the research is backed by Oxford University) the glasses were free as part of the study. No snake oil here.

We will be forever grateful to Dr Fowler for helping us get DS reading and back on track. The very experienced teacher who did not recognise the signs of a child struggling and instead punished him severely should have a special place in hell reserved for her.

I recently read a review of the research. There is no evidence that coloured overlays make any difference whatsoever. I would love to meet someone who has been for testing who does not come out with a diagnosis. It is the biggest con I have ever seen.

I’ve seen other links in the thread so just adding this one. It’s Professor Barnard who does the assessment and is excellent.
www.barnardlevit.co.uk

@backinthebox thank you for this link. I will look them up.

@Millicentmargaretamandaholden thank you!

@Nimbostratus100 I take your point but we're not specifically talking about dark glasses, potentially coloured glasses.

And my son is already sensitive to light and has been since birth due to his autism. So we are already grappling with that issue...

But I will take him to an optician to rule out any issues with eyesight.

Wearing dark glasses does absolutely not cause oversensitivity to light. I’m an optician. I wear my sunglasses whenever I’m outside in daylight because UV light is bad for eyes.
Personally I’m not convinced by Irlen Syndrome but visual stress and pattern glare are definitely real issues.

I disagree. My background is In neurophysiology. It’s been a very long time since I worked in this field, but one of the things I do know is that sometimes things work but the reason why has not been established yet. This does not mean it should be disregarded. There is much research being done in visual disturbances, by well respected clinicians. I doubt very much that you have read all of it. I know I haven’t - the volume and complexity is just too great.

The fact is though that I took my child for a private dyslexia assessment because he was complaining of words moving on the page. I knew nothing at all about visual stress at the time, had never heard of it. After a very basic initial test the clinician said that I would be wasting my money testing for dyslexia as my child did not have it, diagnosed visual stress instead (not a diagnosis I had sought as I did not know about it at the time) and was subsequently treated for free in a way which fixed the problems my son was experiencing (using coloured lenses.)

The study my child was enrolled in was led by Professor John Stein at Oxford University. Hardly a quack or snake oil merchant. I do not feel conned at any point. I was told by my son’s primary school that he would never amount to much as he could not focus on work or read at all, and if he could not read he would not learn anything. He was held back a year and his confidence took a huge knock. He didn’t stay at this school long. He’s now at secondary school - when they assessed his reading age when he started Yr7 they said it was off the top of the scale (it went up to age 17.) Something must have worked, and the only thing we did to bring about this change was gave him cheap (as admitted by the researchers themselves) flip-down yellow lenses.

@Alocasia thank you for this. This is really helpful.

Do you think, after standard eye exam etc, speaking to an optician about colourimetry screening etc would be the best move?

@backinthebox I'm SO glad it worked out well for your son. That's heartening.

My gut feeling is, if I can get to the bottom of the issue, my DS will fare much better too. He actually loves words, alphabets and numbers - it's one of his autistic special interests. He was reading destinations off the front of local buses from age 4 so his reading age is above average. So if we can pinpoint exactly what's happening with him and get the right resources in place to fix it, I'm confident we'll see a big improvement.

@HuggingtheHRT if I were you, I would book in for a regular sight test with an optician who offers colourimetry. The test will be NHS funded if your child is due their eye test. The optician can then advise if they think an overlay assessment would be a sensible next step.
Though I don’t specialise in colourimetry myself, I know it’s not always recommended automatically for visual stress, sometimes there are other interventions that can be more helpful.