Irlen: a fake condition being promoted in NZ schools

The condition Irlen Syndrome is a popular diagnosis for children with learning issues, and is described as a perceptual processing disorder rather than an optical problem. It has failed in rigorous evaluation time after time and is basically a medical zombie. It was first described by an Auckland teacher, Olive Meares, in 1980.

In the last 30 years no reliable scientific evidence has shown that the syndrome exists, or that coloured lenses that are prescribed are an effective treatment. The Royal Australian and New Zealand College of Ophthalmologists (RANZCO) said that "there is no evidence that Irlen Syndrome exists, and there is no proof that supposed treatments, such as Irlen lenses, help those with reading difficulties". Further, a paper published in Clinical and Experimental Optometry Journal overviewed the systematic reviews and summarised the recent evidence and concluded that "there is not yet a reliable evidence base on which to recommend coloured overlays or lenses for the alleviation of reading difficulty or discomfort."

All this non-positive evidence hasn't stopped a charity called Empowered Learning from running programs in various schools here in New Zealand. From 2018-2022 there have been 625 children referred to an Irlen diagnostician from this charity, although about 40% don't attend the appointment. Of those that do - 291 have so far been fitted with corrective lenses, and there have also been 32 refits. Empowered Learning covers the initial costs, but once you step out of the program testing and lenses can cost up to $1000 - which is a massive financial burden. Children grow, and accidents happen; they will require new pairs of glasses eventually. Using ineffective treatments could delay a child's learning.

Empowered Learning receives funding from Lottery Grants Board, Rotorua Energy Charitable Trust, Southern Trust, One Fortune Foundation, Rotorua Lakes Council Community Grant and many other organisations. This year's Annual Performance report shows they received $85,000 in donations and fundraising, as well as $97,000 last year. This is money that could have gone towards effective evidence-based treatments.

Sadly New Zealand isn't the only target. ABC reported that Australia also has the same problem with the diagnosis of Irlen Syndrome being promoted in schools.

RANZCO says the reason why some people see an improvement in their child's reading with Irlen lenses can come from the placebo effect, performance bias (Hawthorne effect), increased attention to the child, natural development, or the child being in concurrent remedial programs.

A while ago I spoke to Karyn, who has been diagnosed with Irlen Syndrome and is a user of Irlen glasses, to understand the process of being diagnosed and the treatment:

When were you diagnosed with Irlen Syndrome?

Probably around 2011 or 2012 or so.

How old were you when you were diagnosed?

Roughly 28.

What led you to be diagnosed?

I was talking to the local diagnostician in Invercargill about something unrelated to Irlens, and some of my comments led him to believe I may need the treatment.

Who diagnosed you?

The local diagnostician - he checked my daughter as well, and she was not found to need them, in his opinion.

How much did it cost to get diagnosed?

Nothing.

My insurance company tells me that they will cover this cost of tinting if I need to use my insurance to replace my glasses, as I pay the extra premium for glasses cover. However, I went to the local Dunedin diagnostician, who is an optometrist, and it was about $80 to go through the process of picking the colours that suit me as it is quite time-consuming.

What was the diagnosis process like?

I just answered a million questions, read some stuff, and talked about what the words on the page looked like, if they moved at all.

Then I proceeded to look through a bunch of different coloured lenses before settling on my colours.

How much did it cost?

About $300 for the tinting process for my glasses - and the glasses were a separate cost, as per a normal optometrist.

I tried the contact lenses, and they cost about $1000 (but that included the cost of soft lenses and the optometrist's time, multiple appointments to find the lens shape best suited to me, and all that's involved with trying normal lenses). In theory, they would have lasted a year - sadly, I didn't know how much they would cost until the bill finally arrived, or I would have stuck with glasses.

Did the treatment help?

Yes, I can actually see and don't have blinding headaches every day. I also find it a lot easier to concentrate on my work. If I forget my glasses at home, I can look at the computer for about 30 minutes before I start feeling really nauseated.

Do you think the government should help cover the cost of this treatment?

I think the government should help with the cost of all medical treatments, such as dentistry and optometry, as they are often linked to a person's overall well-being. I would gladly pay more tax for that; however, since they don't help cover the cost of these other treatments, I don't see why they would cover the cost of Irlen's tinting.

What colour glasses did you get?

A mix of purple, blue, grey and UV protection

And why was that colour chosen?

Because they were the colours that felt better to me. You try a bunch of different colours and levels of darkness, trying them together until you settle on what seems comfortable for yourself. However, both times I went through this process, I was warned against picking too many dark colours, but they feel best for me as I have quite severe photophobia and light causes intense pain in my eyes. These colours helped ease this.

When do you wear your Irlen glasses?

Any time I am working at a computer, or in an office or any place that is well lit, but also at the movies. Occasionally I wear them when driving at night, as it helps the pain from oncoming headlights.

I don't usually need them around my home, as I've worked at providing lighting that suits me.

How many pairs of glasses have you gone through so far?

I'm still on my first pair, however, I'm looking at replacing them soon. The added cost of tinting isn't great, since I will need to pay the optometrist to get glasses first, and I can't really afford them either.

When I first bought them, it was about $300 to tint your glasses; you need to make sure you don't have any treatments on the lenses of your glasses too.

I'm sure you are aware that glasses can cost between $150-$1000 depending on your frames, prescription and the fee of the optometrist; I also would like to get sunglasses with the same tint for when I go outside, as while normal polarised sunglasses work well enough. The colours on my prescription glasses are much more comfortable, however, I need full wrap-around frames to stop the sun getting in over the top & sides when I'm outside, which my normal prescription glasses do not do.

Do you think Irlen is a con?

Maybe, I can't say. But I am not going to quibble over the results for myself personally.

If I could do without the tinting, I would, but I have stopped having daily headaches, and I can concentrate on my work better, which wasn't solved with the new non-Irlen glasses I got six months prior (and ones a couple of years before that).

I'm not sure if you'll find this interesting, but once I got my glasses, I found that white actually looks whiter, and when I don't have my glasses, white looks rather yellow.

It would be good if there were more research into this subject, rather than just "it worked for me, so it must be ok" or "there are no studies on this, so it must be fake!" But I figure that'll come with time, and as more people hear about it and want to prove it wrong or right.