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....

Both my autistic DDs have coloured lenses - assessed for different visual stress issues at different stages. Both have found significant improvement - as noted by their schools. Both were assessed by an optometrist following a regular eye test. My other children have no such issues and no need for assessment.

My DDs also have other processing issues - so it is not a great stretch to recognise that visual processing is also effected. The problem is usually is working out how to manage the symptoms and improve their educational experience.

If you are in the south east I can recommend.

Before you spend any money can you try him out reading with sunglasses on and/or printing on yellow paper.

I'v got dyslexia and was given some glasses with tinted lenses as they also mentioned Irlens syndrome. The lense colour is not to dissimilar to my sunglasses and I find yellow paper effective so I don't bother with the special glasses.

Thanks to everyone for their thoughts. I've spent today looking at all the links everyone has sent.

We're going to get a standard eye test asap to rule out obvious issues. There are no specialist colorimetry opticians near us so it'll be at least an hour's journey to see a specialist. But have discovered, by sheer coincidence, one of the country's leading experts on visual stress is based at the University where I worked until very recently. So I'm reading all his papers today and going to try and speak to him.

@HuggingtheHRT Can I please resurrect this thread to ask how this worked out for you, OP? T

hank you to all the people who posted recommendations and if I can bother you again to have some more, I'd be very grateful. My DS is only 5 but complains that he can't see the whiteboard at all and all the letters and words are moving on the page. I took him to the optician (when he said he can't see) who said he was fine. I can't figure out my next steps now. Some assessments for visual stress by opthotrists in london are £600! Any advice - names, links - will be much appreciated. I am willing to travel out

Yogi, I’m a specialist dyslexia assessor and as part of the assessment process I have to talk to parents about children’s vision. Anything out of the ordinary needs to be investigated by a vision professional. Whilst there are some excellent private optometrists, you could also take your son back to the high street optician and request a referral through to behavioural optometry on the nhs.

In general, testing for overlay colours is insufficient. Children can have visual difficulties due to various issues with their eyes as well as struggling due to a light sensitivity aspect. A vision test is also essential to rule out rare but possibly sinister things. My clients have found overlays and tinted specs to be really effective but the health and function needs to be evaluated by a vision professional.

All the best.

@Bimblesalong Thank you so much for your answer, I am very very grateful. Sometimes some simple information as that is very difficult to find!

@yogibutton

He had a test at specialist optometrist for visual stress but the results were inconclusive. Optometrist definitely felt there was something going on, but couldn't put their finger on it. In the meantime DS has been diagnosed with severe ADHD (in addition to his ASD) and has started meds for that. Have also been reading some stuff about how ADHD can cause poor eye tracking. So basically there's a lot to unpick - is it photosensitivity due to Autism? Is it poor eye tracking due to ADHD. Is it Irlans/visual stress?

In a nutshell - we're still riddling everything out...

@yogibutton - btw I am 'HuggingtheHRT' from the original post, but I name change on here periodically.

Yes l have it.. been to eye clinic.. l have to have to have tints in my glasses both long and reading.. l do actually find sunglasses better help.
My screens on everything even the television is dark.. my kindle and phone darkest they will go.

Hospital optician said don’t waste money on it and made me glasses to help. Local good optician said similar. It only seems to be recognised by people who pay money to people who pay to be able to diagnose it. Not that colours can’t help.

Can you get a behavioural ophthalmologist on the NHS? I didn’t think you could.

Bingowingo certainly in the few counties I’ve consulted into, although what happens varies. Our county does additional behavioural optometry, prescribes exercises and checks progress. The neighbouring county’s nhs service feeds into a full visuals difficulties clinic.

It’s an area with a lot of disagreement, even amongst the highest level professions. In practice, I’ve seen people have such a huge difference when they’ve had things evaluated. Some need updated lenses in their specs and some do benefit from tints too.

Our professional protocol is to ask the high street optician to refer on to behavioural optometry, so hopefully provision is pretty widespread, although some parents choose to go to an independent.

Just an update - might be useful for anyone in London. The optician's admin said they can't refer to the behavioural optometrist, as "they are only private". [don't know how much they actually know; the optician is on holiday and will call me back] They said go to GP; GP referred to general ophthalmology hospital dept and said they would direct me from there. Let's see what happens. Everything is just so contradictory - when I called to make an appointment with the GP, admin told me the GP will refer me to the community paediatrician who will then make a decision whether and where to refer DS. This is not what actually happened at GP.

Good luck @dressedforcomfort Where did you end up going (re: specialist optometrist)?

Thanks Yogi. That is frustrating. It’s a very muddy process.

I've never heard of it but it describes my DSiL to a tee

I have a child who I suspect may have visual stress. There is a specialist optician in Portsmouth/Portchester who offers screening (Cameron Davies) and we almost paid for screening last year, but the optician picked up a tracking issue we have been working on instead.

I was incredibly open about being skeptical and the optician was excellent. She understood my POV but also said that the phenomenon was first noticed among actors who found lines easier to read under different coloured theatrical lights. The first overlays were theatrical acetates.

I think I would not go as far as glasses but I would definitely consider the use of overlays and coloured paper.