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Irlen syndrome, the condition medical experts say doesn’t exist, promoted in schools

Email Irlen syndrome, the condition medical experts say doesn't exist, promoted to school teachers ABC Goldfields By Rhiannon Stevens

Updated June 26, 2019 12:33:28

Louise Billlinghurst's son wears the lenses Photo: A diagnosis for the syndrome was 'discovered' by Helen Irlen who later patented the coloured filters. (ABC Goldfields: Rhiannon Stevens) Related Story: How our schools are failing to teach kids to read Related Story: 'Kids are feeling dumb': Parents push for smarter teaching of dyslexic students Audio: Eye specialists take aim at Irlen syndrome (Health Report) Map: Kalgoorlie 6430

You might mistake them for hip sunglasses, but these tinted lenses are often proposed as the treatment for a controversial medical condition.

Key points:

  • Irlen syndrome is not recognised by most medical professionals and is diagnosed by a licensed Irlen diagnostician
  • Information on treatments is entering public schools via social media and out-of-hours teacher training sessions
  • Treating the so-called syndrome can stall good interventions known from evidence that works, experts say

Available in all the colours of the rainbow, the glasses are synonymous with Irlen syndrome, described as "a visual perceptual problem".

The only problem is, according to most medical experts, Irlen syndrome does not exist.

Last year, the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) came out strongly against Irlen syndrome, saying there was no evidence the condition existed or the treatment of reading difficulties with Irlen lenses worked.

In its position paper, RANZCO methodically dispelled the reasons why anecdotal evidence from parents showed Irlen lenses working.

Yet information and treatment for Irlen syndrome continues to make its way into schools, raising questions around who is sharing information with educators on medical conditions and learning disabilities.

Diagnosis runs counter to medical professionals

The syndrome was 'discovered' in the 1980s by Helen Irlen, who later launched the US-based Irlen Institute which patented coloured filters for treating the syndrome.

What is (or isn't) Irlen syndrome?

  • Commonly defined as a perceptual processing disorder
  • It suggests that the brain is unable to properly process visual information due to sensitivity to certain wavelengths of light
  • Symptoms are said to include poor concentration; difficulties with reading, writing and comprehension; glare sensitivity; headaches and poor depth perception
  • RANZCO's position statement states "there is still no sound theoretical basis or evidence that the condition actually exists"
  • Associated treatments such as coloured lenses have not been proven to be any more effective that a control group
  • RANZCO also warns about other ineffective and unproven vision therapies offered for learning disabilities such as dyslexia

Source: No scientific evidence that Irlen Syndrome exists, say ophthalmologists (RANZCO)

According to the Irlen practitioners, the condition manifests in a variety of ways and can affect reading, writing, and leads to concentration difficulties, as well as light sensitivity and low motivation.

To receive a diagnosis and treatment you do not go to a medical professional.

Instead, you need to visit a licensed Irlen diagnostician, and in Australia it can cost around $700 forthe coloured lenses.

Then there are the additional costs of glasses frames, follow-up tests, and sometimes new colour filters.

Yet some people, like Louise Billinghurst, swear by them.

Her family's Irlen treatment started after her son, who had reading difficulties, visited an Irlen diagnostician several years ago.

Every member of Mrs Billinghurst's family of five now wear Irlen lenses.

"[The diagnosis] was probably a life changing moment as a parent," she said.

Irlen lens Louise Billinghurst Photo: Louise Billinghurst, her three sons, and her husband all wear Irlen lenses. (ABC Goldfields: Rhiannon Stevens)

"I sat there crying in the room, I thought 'I can now understand what's happening'."

After struggling with reading comprehension, and already receiving speech therapy and support from his school, Mrs Billinghurst believes her son drastically improved within six months of wearing the glasses.

That was proof enough for her.

Mrs Billinghurst said she herself wore them to treat low-grade headaches, and it made reading from computer screens comfortable.

But she admitted she has not looked into the science behind Irlen.

"I haven't actually looked at the research because for me it works" she said.

Irlen billinghurst son Photo: Mrs Billinghurst's son wears Irlen lenses. (ABC Goldfields: Rhiannon Stevens)

She likened the controversy around Irlen to the Keto diet.

"There is very strong arguments to both sides. In the end I don't think it is one size fits all," Mrs Billinghurst said.

Irlen promoted to schools

A primary school in the Western Australian town of Kalgoorlie has advertised a recent visit by an Irlen clinic on their Facebook page.

"Does your child have reading, spelling, writing, concentration difficulties or headaches?" the advertisement asked.

Kalgoorlie school advertisement for Irlen clinic Photo: One Kalgoorlie primary school advertised the recent visit by Jo Starke's Dyslexia and Irlen Clinic. (Supplied)

Another school in the same region offered a professional learning session for teachers, run by an Irlen diagnostician.

The diagnostician who ran the event said 17 teachersfrom schools across the region attended.

According to the Irlen diagnostician, the training helped teachers identify Irlen syndrome and understand how it relates to dyslexia, autism, and behavioural issues in the classroom.

It is the third region in Western Australia where free sessions have been run in schools.

The WA Department of Education stressed that the recent information session in Kalgoorlie was informal and occurred after school hours.

It did not condemn the professional learning session, and said it was aware some parents were interested in treatments for Irlen syndrome.

A non-existent syndrome?

A non-existent syndrome?
Irlen syndrome treatment claims to fix reading difficulties in children by prescribing them coloured lenses, but there is no evidence the approach works.

"Schools are trusted to make their own decisions on the training they provide for their staff," said Martin Clery, assistant executive director of the Department of Education.

But leading medical and dyslexia specialists say Irlen coming into schools was concerning.

"Schools, of all places, should be places where what's done is driven by the very best and most reliable evidence base," said Anne Castles, a professor of cognitive science at Macquarie University.

"The evidence we have [on Irlen treatment] is that it's not effective".

Medical 'minefield' for schools

For experts working with schools, navigating the positive responses that families and teachers sometimes have to alternative treatments can be complex.

Generic school kid Photo: Experts say Irlen lenses can take students away from interventions that work. (ABC News: Stephanie Anderson)

Mandy Nayton, from Dyslexia-SPELD Foundation WA, said that even if people accepted Irlen lenses as just having a placebo effect, it did not follow that it was necessarily harmless.

"It can sometimes take students away from really good interventions and the kind of interventions that we know from the evidence does work," she said.

Western Australia is not the only place where Irlen representatives have approached schools in Australia.

Jodi Clements, the president of the Australian Dyslexia Association, has seen it before.

While running teacher training for dyslexia on the NSW coast, Ms Clements encountered teachers who were resistant to her evidence-based approach.

"I wondered why I had all these teachers shaking their heads, only to find that they had had an Irlen person come into the school," she said.

"We've got people who are not ophthalmologists coming into schools and talking about medical-type research, and they're not well qualified in the medical field at all."

For time-poor teachers and principals, sourcing information can be difficult.

According to Ian Anderson, president of the WA Principals Association, it can be "confusing" for schools to find the correct, research-based information.

With so many companies seeking access to schools, it's a "minefield", he said.

Topics: health, child-health-and-behaviour, medical-ethics, medical-research, schools, kalgoorlie-6430, nsw, wa

First posted June 26, 2019 09:55:37

Contact Rhiannon Stevens

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