Embracing Irlen Syndrome: one adult’s journey (Part 4 and conclusion)
Embracing Irlen Syndrome: one adult’s journey (Parts 1, 2 and 3) available HERE
Discussing Irlen Syndrome
Our family knows that Irlen Syndrome is a life-long journey. The 1 in 5 people who have it don’t (as many people often ask us) just ‘grow out of it’. However the lucky ones who have been diagnosed will learn how to manage it. We are constantly learning from the diagnosticians – they deal with Irlen Syndrome on a daily basis and see the range of symptoms that are experienced by their clients. Over the last twenty years we have joined social media groups to share experiences, read copious amounts of information and eagerly waited for new research outcomes. One important lesson we have learned is that we must advocate for Irlen Syndrome so that more people know about it.
The lenses are wrong if the world looks ‘rose coloured’!
Talking to people about Irlen Syndrome has meant that we have encountered extreme and diverse reactions. There will always be believers and sceptics! Twenty years ago if people noticed my husband’s tinted lenses their first response would often be a joke about ‘seeing the world through rose coloured glasses.’ The cliché did wear thin but we understood that it and some rock stars or actors, were the only connection many people had to coloured lenses. Before the testing and diagnosis we had not known what these glasses could do or how individual the lens tints would be. People were not aware that when a person with Irlen Syndrome looks at white paper through the correct lens colour combinations that the paper should still look white – a dull, less glary white! If a person wears ‘rose coloured’ Irlen lenses, the world (and the paper) should not look rosy but their future should!
‘I know all about dyslexia’
A mistake that we initially made when we spoke about Irlen Syndrome was to call it ‘a type of dyslexia’. We did this because it was often described in the literature as ‘perceptual dyslexia’ and ‘dyslexia’ is something most people have heard about. Big mistake! Once people heard the term, ‘dyslexia’, they thought that they knew what my husband was experiencing with Irlen Syndrome. They couldn’t have been more wrong. The two conditions can certainly occur together but the processing is occurring in different parts of the brain. Dyslexia is a result of poor organisation in the left hemisphere of the brain. Irlen Syndrome is a processing deficiency that occurs in the mid brain and visual cortex due to sensitivity to certain wavelengths of light.
Dyslexia versus Irlen Syndrome
The Australian Dyslexia Association’s defines a person with dyslexia as ‘having a persistent difficulty accurately decoding single words’. A dyslexic person therefore finds it challenging to convert letter symbols to their correct sound (decode) and convert sounds to their correct written symbol (spell). The left side of their brain is not ‘filing’ the sounds with the letters and so decoding words can become a daunting puzzle. The mid-brain of a person with Irlen Syndrome has what could be termed ‘an allergic reaction’ to light or certain wavelengths of light. This reaction can cause a range of symptoms which vary in their severity, from mild to extremely severe. Print distortions are just one of the things that can be experienced. Understanding the full range of possible symptoms is important.
Deciphering the learning puzzle
What we have learnt over the years is that a diagnosis of Irlen Syndrome may just be a piece of the learning puzzle. A person can have eg dyslexia or Irlen Syndrome or both. Often it is thought that dyslexia is the cause of swapping or reversing letter. However it could be the distortions caused by the Irlen Syndrome that make people misread letters eg. ‘d’ and ‘b’ or ‘p’ and ‘q’. Once the distortions are taken away by the use of coloured overlays or tinted lenses, spelling and decoding may become achievable. In that instance, a person would only have Irlen Syndrome. However if decoding is still a problem once any print distortions have been removed, then that person needs to investigate other methods to help them with eg dyslexia. Light sensitivity can also cause concentration difficulties or headaches. Often this can be misdiagnosed and medications prescribed. However coloured lenses to filter out the wavelengths of light that are making it difficult to concentrate and focus could be the missing puzzle piece people are actually seeking. Being tested for Irlen Syndrome has been the answer for so many and yet so many more have not heard about it.
Irlen Syndrome is real
It is important to advocate passionately but with an understanding that Irlen Syndrome, and what it means to have it, are still quite misunderstood by so many people. It can be easily dismissed by education and medical professionals. Often it is regarded as a ‘label’ that parents can use to excuse poor or reduced academic performance in their children. Adults with Irlen Syndrome know what a change the coloured lenses have made to their lives and have a role to play in advocating for Irlen Syndrome recognition. It is very, very real. For our family, talking to community groups; visiting schools; joining social media; and writing blogs has helped spread the word by using our experiences as a platform.
The Irlen journey continues
Our Irlen journey is a life-long commitment. I realise now that this blog has not just been ‘one adult’s journey’ but the journey of ‘two adults’ navigating the Irlen Syndrome road. When we had a family, we knew that our children could also have Irlen Syndrome. Both of them were diagnosed when they were nine years old but their symptoms are not exactly the same. My young niece and my sister, a university academic, also wear Irlen lenses. As I become older, I realise that all my life I have probably been compensating for light sensitivity – car lights distract and hurt my eyes, I can’t go outside without wearing sunglasses and reading off screens is tiring. Investigating this might be the beginning of a new path in our Irlen journey.
Books start conversations so start one today!
Our family has decided to embrace Irlen Syndrome. Three years ago we discovered another way to become advocates for it. My two Irlen lens wearing children and I became authors of a children’s adventure series with Irlen inspired heroes. ‘The Story Weavers of Bacalen’ brings learning differences such as Irlen Syndrome into schools and onto bookshelves around the world. How we brought these stories to life and also to the stage is another story….
Embracing Irlen Syndrome: one adult’s journey (Parts 1, 2 and 3) available HERE
Visit: www.bacalenbooks.com.au
Author: Dr Annabel Bowcher (PhD), Science Communicator and co-author of the children’s chapter book adventure series, The Story Weavers of Bacalen.
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