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....

Yes I do. Unless conditions are optimal, eg if I'm tired, letters jump around on the page. It's impossible to read a moving target! I don't think you can get tested for it because I don't think it's something recognised by the medical profession in any official capacity, in the UK anyway. I could be wrong about that. Coloured overlays help, reading black on white isn't the best. Fluorescent lights are worse so it's harder to read screens etc, switching to dark mode helps. You figure out coloured overlays by trial and error. You can also get the lenses tinted in glasses, prescription or plain, if a particular colour is helpful to you. Brown tinted sunglasses help with the glare on a general day to day basis, worn as necessary regardless of what the sun is doing.

Oh and although it won't work on the internet, if you go into your computer's Control Panel in the menu you can change your background colour for the screen, which will then apply to all the programs on your desktop. Might help you figure out which overlay to try

We have experience. DS was assessed by a behavioural ophthalmologist who identified this. He has glasses with colour overlays.

My DD has tinted coloured lenses prescribed by a specialist optician. She also has asd and a fairly severe light sensitivity - her glasses are quite dark and only allow about 25% light through. Testing showed a 25% improvement in reading speed and a significant improvement in accuracy - online skipping or words missed when wearing her glasses at all. Her migraines have also greatly improved.

My DD was diagnosed with this when she was 17 following suggestions from her school that she might be dyslexic and as a teacher myself had suspicious to the extent that I provided her with coloured overlays which seems to help. She wore glasses from 2 and one optician picked up that she had tracking problems at around 9. She used to lose her place a lot when reading aloud.

Although she did well at GCSE but was about a grade below in most of her subjects where she should have been because her processing of written material is so slow that she just ran out of time. She really struggled at the beginning of her a levels and we finally paid to have her assessed by an Ed psych at the dyslexia institute. Ed psych was totally dumbfounded as to why it hadn't been picked up before but my DD is very bright and had found ways of coping with this. Following the assessment she got additional time in her exams and then did very well at A level. She finds yellow paper easier to read so any printed materials were provided in that colour as well as a toned down background on the smart boards. She was also allowed to do her exams on a laptop again with a different colour background.

She went on to performing arts training and both places she has trained have been very very good at ensuring that music and scripts were provided in a colour that she finds reading easier on.

There are specialists in the uk. There's a guy that works in Nottingham and London.
I know someone who priorities her special glasses though money is tight. It's the difference between being able to think and speak clearly and tending to stumble and be repetitive.

Thanks to everyone who has responded. My gut is telling me that this is real and DS definitely has this. But, as it's not officially recognised, DH is worried about giving money to snake oil salesmen who get rich off anxious parents of disabled kids...

@picklemewalnuts - by any chance do you know the name of the specialist in London?

Yep, I’m also autistic and was diagnosed with Meares-Irlen by an orthoptist in January. I now have special tinted glasses and the difference is unbelievable.

Oh and by the way, I was diagnosed with dyslexia in 2021 but I’ve never been convinced about that. All of my ‘dyslexia’ symptoms are now fixed by the glasses so it was 100% visual processing rather than dyslexia.

My DD hasn’t been officially diagnosed but she started to complain that words moved in the page and thought it was like that for everyone. She was under the care of children’s neurology for years. She had headaches and missed a lot of school… I investigated visual stress and bought a set of coloured overlays and we just tried out combinations at home. She also has prism lenses that help enormously. I really wish we’d investigated earlier. She was at university when we discovered it. She struggled at school all the way through. There were no obvious signs of dyslexia -her handwriting and spelling were always great.

Some NHS departments do assessments for visual stress - it is a bit hit and miss unfortunately. Examples include:
www.ruh.nhs.uk/patients/orthoptic/documents/Visual_stress_SLD.pdf
www.northdevonhealth.nhs.uk/wp-content/uploads/2013/11/literacy_difficulties.pdf
www.hey.nhs.uk/orthoptics/orthoptic-services/

This may help your DH to understand some of the issues?

Both my DDs were diagnosed by qualified optometrist.

Look up Alan Penn. I can't vouch for him, but someone I know absolutely does.

@handmademitlove this is massively helpful! Thanks

@picklemewalnuts will do. Thanks!

Retired Senco here. There are opticians throughout the country who will, for a not unsubstantial fee, screen for Irlens. As someone else has pointed out though, it’s not recognised as a syndrome as such by the medical profession here. I have had several children who have been tested and purchased glasses with coloured lenses - again at a big cost. My views on as to whether the glasses work or not are mixed. Certainly, my research shows some anecdotal evidence of success, but I was unable to find any peer reviewed medical research that was definitive. However, I have worked with children who said the coloured lenses helped them ‘a bit’. These were usually children who struggled to read at an age equivalent level and who were also receiving other interventions to support their reading.
When parents would approach me, I’d always ask them to get a NHS eye test first. I do remember one boy who was about 10. He had a private test at a local optician, who said he had Irlens and that he needed lenses that were pale pink. He wouldn’t wear them because they were pink! They cost his mum about £300 and this was about 5 years ago.
I always advocate for a dyslexia friendly environment in class, so all digital resources have a cream background where possible. Fonts on worksheets should be clear - Comic Sans is generally the best. It’s nigh on impossible though to produce every resource a child might need on their preferred colour paper - a lot of the time the child isn’t that bothered, but some get almost interrogated at home time from their parent as to what they’ve used and was it photocopied on the right coloured paper.
what I did find out in my research was that a huge number of children do have weak eye muscles because they aren’t in environments where they have to see at different distances. So it’s true - spending too much time with your head in a book or on a device can affect developing eye muscles.

@Soontobe60 thank you for this. I will definitely get a standard eye test sorted to rule out any short/long sightedness. And thank you for your thoughts, I really appreciate it in light of your experiences.

My son's issues do go beyond reading issues. He struggles with light /glare in many contexts and has done since infancy - hence I'm questioning Irlens rather than standard dyslexia. But I could be wrong. Best to keep an open mind.

I have 2 dyslexic children. I’m pretty sure Irlen’s has been discredited.

I think it’s worth trying coloured overlays and seeing if they make a difference. They don’t cost much. I bought a random selection and DD uses them all the time now, for reading and to place on top of a computer screen. Getting tested for prism lenses isn’t so expensive. It’s to do with muscle weakness. A child might be able to get a hospital referral. Many opticians will do it but you’ll have to phone around. Specsavers and the like don’t do it. DD, now an adult, had her eyes retested recently. The eye test, standard eye test, plus testing for prism was £50 in London.

It doesn't exist - It is a completely made up syndrome by a company that sells expensive training and aids

I also have two dyslexic children and have also read that Irlen’s has been discredited. However, in my unqualified view, while that might be the case for the majority, overlays (not expensive!) have been of benefit to my children. There is a marked difference in my youngest’s ability to read fluently, and without skipping words. My eldest can concentrate for longer and interestingly finds reading music much easier when she uses hers.

So I’m not discounting the clinical evidence against Irlen’s but will say that my sample of two have found that overlays have helped. They were assessed by an ophthalmologist.

You need a specialist optician, there's one in Manchester

My son has irlens, he doesn't have dyslexia but is autistic. I know some pp's have said it's made up or discredited, which is fine, hoover whatever it is means my son cannot read without his glasses or overlays, so they're more than worth it for him.

overlays can help with visual stress, but this is not in any way related to the claims of the Irlens company.

You don't need Irlens overlays, and you don't need any sort of assessment, just try a few different shades of coloured plastic and see what works for you. It does tend to be the translucency rather than the colour, but some children prefer different colours too.

You can just buy coloured plastic wallets, they are a few pence each, try putting the written paper inside, and see which makes reading easier

The Ed psych who diagnosed DD said that the very expensive lenses were just not worth it and that overlays or different coloured paper were as effective.

But you don’t need to buy any training or aids. You can buy plastic overlays anywhere very cheaply for pence/a few pounds. And they make a difference to my DC.