You’re at a dinner table with 6 friends: a psychologist, a teacher, an optometrist, a teacher, a physician, and a neurologist. You tell them, “bright lights hurt my eyes, words move on the page when I read, and fluorescent lights give me a headache. Any chance one of you knows what my problem might be?” Much to your surprise, you get several different answers. “It’s Irlen Syndrome,” one of them says. “No, no, I think you have visual stress,” says another. The neurologist on your right says confidently, “I’m pretty sure you’re describing a visual processing problem.” The answers keep coming, “Meares-Irlen Syndrome! Sensory Processing Disorder (SPD)! Scotopic Sensitivity Syndrome!”
Woah, hold on. How can they all have a completely different diagnosis for the symptoms you are describing? Who’s right? The answer…they’re all right. Over the last 40 years, there have been a variety of different names used to define the cluster of symptoms that all stem from a light-based processing problem.
About 40 years ago, American psychologist, Helen Irlen, identified the symptoms of a disorder that would eventually come to bear her namesake, Irlen Syndrome. In its early years, Irlen referred to the disorder as Scotopic Sensitivity Syndrome, based on the belief that the primary difficulties associated with the disorder occurred when the brain tried to process light within the scotopic range of the visible light spectrum. Many people misinterpreted the label to mean scotopic vision or night vision, which confused professionals and discredited the method. As a result, researchers began calling the disorder Irlen Syndrome. Early research on the topic can still be found that uses the term Scotopic Sensitivity Syndrome, however. Some places in the literature also refer to the disorder as Meares-Irlen Syndrome, paying respect to Olive Meares, a teacher in New Zealand who identified similar symptoms as Helen Irlen during the same time period in the early 1980’s. Unlike Irlen, Meares did not move beyond symptom description to treatment protocols or developing methods of intervention. In recent years, optometrists introduced the term, Visual Stress in an attempt to simplify and generalize the name with the hopes to garner broader acceptance and understanding of the disorder. Academic research using the term Visual Stress also acknowledges the disorder’s other labels, Irlen Syndrome, Scotopic Sensitivity Syndrome, and Meares-Irlen Syndrome.
When it all comes down to it though, at its core, Irlen Syndrome is a visual processing problem (i.e., a problem with how the brain processes the visual information it receives). It is also technically a sensory processing disorder, as it involves one of the primary senses. So, don’t let the names confuse you. It doesn’t really matter what it’s called. If your brain struggles to process visual information correctly and this causes symptoms of physical discomfort or visual distortions, you probably have Irlen Syndrome, Meares-Irlen Syndrome, Visual Processing Problems, Sensory Processing Disorder, Scotopic Sensitivity Syndrome, or Visual Stress. Don’t worry, the good news is that the most effective intervention for your symptoms is colored filters, no matter what you decide to call it.
Seven months ago, I had a conversation with Ethan Lynch, a 19-year-old college student from Ireland, who wanted to help raise awareness of Irlen Syndrome within the Irish education system. I never could have imagined what would happen next, as Ethan, his cousin Oliver, and his friends embarked on an awareness and fundraising campaign to help change the lives of individuals with Irlen Syndrome. Below, Ethan details his journey in his own words. We hope Ethan’s motivation, creativity, perspiration, and supreme dedication inspire you as much as it inspired us. One person can make a difference. One person can ignite change. One person can generate momentum. Thank you, Ethan, for your incredible dedication to changing lives![video width="848" height="480" mp4="http://www.irlensyndrome.org/wp-content/uploads/2021/10/Irlen-Go-Fund-Me-Video.mp4"][/video]
Irlen Syndrome: A Whole New Perspective
by Ethan Lynch
Hello, Irlen Syndrome Foundation, just a brief introduction. My name is Ethan Lynch, I’m 19 years old from Dublin, Ireland. Currently, I’m a second-year college student studying marketing at TU Dublin. Alongside my college course, my main interest is boxing which I’ve been doing for the last 3 years. Recently, this experience lead to me obtaining a coaching role in one of the most highly regarded boxing gyms in Ireland named ‘Headon Boxing Academy’ (HBA). Before then, I was playing rugby for both my club Lansdowne FC and my school, St. Michaels College.
I was diagnosed with Irlen syndrome in my final year of secondary school (High School) at 18yrs, 6 months prior to my final exams known as the ‘Leaving Cert’ in Ireland. I cannot begin to explain the positive impact these tinted glasses have had on me in all aspects of my life, but I will get to that later. Firstly, I feel it is important and helpful for people who do not have Irlen syndrome or have recently become aware of the disorder, to understand it better by outlining the impact it has had on my life. So, I will briefly go through some of the struggles my family and I went through throughout my time in the education system.[video width="848" height="480" mp4="http://www.irlensyndrome.org/wp-content/uploads/2021/10/Irlen-Swim-2.mp4"][/video]
From the age of 5yrs to 12yrs I was assigned to the resource classes, as the teachers spotted early on that I needed further help and guidance, especially with reading. As the years progressed, my resource teacher (Mrs. Hogan) could not exactly pinpoint what was happening or why I was struggling. For years I was just labeled as dyslexic, even though I was never diagnosed with dyslexia. I remember just how frustrated I would get, and my overall confidence and self-esteem were slowly being diminished. While that was going on, my mom brought me to see two educational psychologists to try and determine the root cause of my struggles. The second educational psychologist tested me again for dyslexia. This was my third negative result from a dyslexia test. This particular psychologist also made it clear to my mom that the resource classes were not only ineffective but were having a severe negative effect on my self-esteem and any help I needed moving forward should be completed outside the remit of my school. I was a very shy and sensitive kid back then. I did not know what the feeling was, but I ended up having bad anxiety issues whenever I was around my friends and family. Surrounded by big groups of people, I could not engage properly, I always wanted to play on my own. It also impacted my one big escape, sport.
I loved playing rugby and football as a kid, it was the only way I could show glimpses of my true personality and my fun side. It was a time when I was not surrounded by extra assistance or feeling like I had a disadvantage because I simply could not process information as fast as others. It was the one time I was on a fair playing field. But there were occasions where I always felt that I was going to mess up and not perform for my team. I tended to always talk down about myself because of what kids around me in school would say to me. My decision-making on the pitch would be poor, and I simply had no confidence at times. But that mindset soon changed for me and that amazing feeling of being in your happy place came back.
My mom discussed the Educational psychologist’s report with Mrs. Hogan who agreed that we needed a change in direction in dealing with my issues. She put us in touch with a new speech and language therapist who recommended that I meet with Karen O’Connor who runs the ‘Child Development Centre’ in Ireland. This center runs programs for children with a wide range of issues. We did not know it at the time, but this program was going to drastically improve my school and social life. I vividly remember the first time I stepped foot into the room where “The Lift” as it was known was run. I was in a group of 8 to 10 children who had experienced similar issues to me. This program, to explain it briefly, was a music therapy program that took place 5 days a week for 3 weeks. Each child was given a microphone headset and any book of interest. For 20 to 30 minutes, each child would take a spot in a room by themselves and read aloud while listening to classical music, and as you read, you can hear yourself through the microphone.
This form of therapy helped with my sensory imbalance and enabled me to navigate my world much better in terms of social cues and interaction with others. My mom has said it was like someone had unlocked me. A good example of this was on a trip I took with my grandmother shortly after completing “The Lift”. Usually, I would sit in silence and not interact with anyone. I do not personally remember this happening, but apparently, I was constantly talking, asking questions and giving my own input into the topic of discussion. My grandmother thought she picked up someone else’s grandchild! That is just one example of the impact this program had on me.
From here, my parents were more confident with how I would cope with life in senior school (13-18yrs). Although I was more confident than I had ever been, there were still some difficulties I was dealing with academically. I was still being mistaken for having dyslexia year in year out, but this time it wasn’t just the teachers, friends and other students were also saying the same thing. I was constantly making the same silly mistakes both for homework and in exams, so you could say it was understandable to make that assumption, as I didn’t fit into any category recognized by the Department of Education in Ireland. These mistakes were repetitive – reading the question wrong, struggling to copy down notes on the board, losing the meaning of a sentence, comprehension was particularly difficult and my time management for exams was poor. Along with this, I was still nervous to read aloud in class or ask questions in front of everyone.
Fast forward to my final year in senior school. One evening during after-school study my good friend Mikey Kelly came in wearing orange-tinted glasses. He told me that he had been diagnosed with pattern glare, similar to Irlen syndrome and the tinted glasses helped him to read. He then went through his symptoms and what his perspective was when reading any text. The glasses stopped the words from appearing to move or jitter on the page. I could instantly relate to what he said. As soon as I got home I told my parents what had happened. They then remembered that my cousin Oliver had mentioned that he had new colored reading glasses a few years previously and contacted him straight away. He explained he had Irlen syndrome and that very evening we completed the online test on the Irlen website. Two days later I had my first appointment with Maureen McMenamin, a Diagnostician.
I will always remember my first appointment with Maureen, it was a mixture of emotions. It reminded me of the many places my mom had brought me to seek extra help and some of those had no positive impact whatsoever, so as well as being excited, I had that nervous feeling that it might not work out. Maureen could not have been more welcoming and friendly to us as we walked into her own home. I felt comfortable around her, and I honestly could not speak more highly of her. Without her, I’m not sure where I would be in terms of my journey to Third level education.
Further assessment proved without a doubt that I had Irlen syndrome, thankfully on the milder scale. So then we started to investigate what color or colors would be needed to make my filtered lenses. After 2 and a half hours, we could not get a perfect match … we were 90% there. At the time I was so drained and disappointed, I went back to school thinking I could do some study, but I was both physically and mentally exhausted. I had to wait a further 2 weeks for my next appointment with Maureen to try again. It was possibly the toughest two weeks of my final year, knowing that there was something out there that could help me but I couldn’t have it yet frustrated me so much. Finally, back in Maureen’s home, focused and beyond determined we found a 100% match after an exhausting 3hrs of trying.
People tend to ask me how it must have felt when I finally got my tinted glasses. Yes, I was full of joy and excitement, but my main feeling was relief … I was relieved that it worked and that I finally had an answer as to why I constantly made all those mistakes. I looked forward with optimism reading my next school report card, which hopefully wouldn’t say “Ethan needs to concentrate harder,” or “Ethan keeps making silly mistakes.” At the same time, I don’t have anything but nice things to say about my teachers, they’ve helped me to the best of their capabilities, and I couldn’t be more appreciative of the support they’ve given me over the years.
I could instantly tell the difference these glasses brought to my academic life. They’ve given me a whole new perspective of learning. Finally, I can read a page of text the same way that the average student can, which is quite mad to say if you think about it. As soon as I told my teachers what I had, and how this was an issue I had for my whole school life, every teacher had the same reaction, “that makes a lot of sense now,” referring to the common and constant mistakes I always used to make and how long it took me to complete some tasks.
Two years on, after a long hard 18 months of the devastating impact of covid-19, where the majority of people had too much time on their hands and were desperate to keep themselves busy, I, along with my cousin Oliver Madigan and my good friend Mikey Kelly, decided to organize a fundraiser for the Irlen Foundation in the summer of 2020. We documented all the fundraisers on my Instagram. With the kind help of Adam Kerr, I made a quick 2-minute video explaining what Irlen syndrome was and the task for this charity event. We planned to swim in the Irish Sea every day for 17 days (representing the 17 years of my life without my Irlen filtered lenses!). On the final day, along with some friends, we cycled from Dublin to Kilkenny, 95km (60 Miles) approx. It was tough at times, but overall, an extremely rewarding experience.[video width="368" height="672" mp4="http://www.irlensyndrome.org/wp-content/uploads/2021/10/Irlen-Go-Fund-Me-Video-2.mp4"][/video]
With our fundraising effort, we managed to donate €5,400 or $6,150 to the Irlen Syndrome Foundation! It was the very first independent charity event for Irlen syndrome in Ireland. Along with the challenges, we also held a competition for two pieces of clothing from Get Ahead & Co. This competition helped us push our message out to others, as contestants had to share the post on their Instagram and tag one friend. Overall, it was an enormous success and one giant step for the recognition of Irlen syndrome in Ireland. Lastly, my former school St. Michaels College, Ballsbridge donated an extra €1000 to the Irlen Syndrome Foundation, which was included in the same fundraising effort! It was documented on the school’s weekly newsletter, https://stmcdaily.tumblr.com/
I want to personally thank everyone again who shared, donated, and took part in the fundraiser, without you guys, I would not have been asked to write up my story for the Irlen Syndrome Foundation website and continue this unbelievable journey! It was a dream come true to shine light on Irlen in a country that knows little about the disorder. I want to give a special shout out to my old school St. Michaels College notably Mr. Hogan, Mr. O’Connor, Mrs. Hogan, and all the chaplaincy team for all the help and guidance you have given us for this venture. To Maureen McMenamin for her kindness and endless patience. To Karen O’Connor and the Child Development Centre for the brilliant work they do, my family and close friends, and lastly to Sandra Tosta, who has been so supportive over the last few months especially with allowing me to talk about my story on the biggest platform for Irlen.
Irlen Syndrome may affect an individual’s reading performance, but it’s not a reading disability. In fact, many great readers suffer from symptoms of Irlen Syndrome, such as eyestrain, fatigue, headaches, light sensitivity, depth perception issues, or attention and concentration problems. Here are a few key research findings related to Irlen Syndrome that have nothing to do with reading.
My name is Ana Paula D. B. Federicci, I have two children, 14-year-old Luis Felipe and 11-year-old Gabriela, and all three of us discovered we have Irlen Syndrome in October 2016. Early in July, 2017, through a WhatsApp chat group formed by patients, relatives, friends, and professionals who live with the Irlen Syndrome and share experiences and knowledge, we had the idea of a picnic. The objective of this gathering was to strengthen and materialize the force and bond of the Irlen group, showing children, teens and relatives that there are many others like them and that they are not alone. We also wanted to make the #IrlenDoesExist movement public, so as to obtain acknowledgement by 100% of the middle class, and to gain the attention of media and government to recognize Irlen Syndrome so that the diagnostics and treatments could be accessed by all patients.
The first Irlen family picnic happened in 2017 and turned squares and parks in 8 Brazilian cities colorful and happy. Everyone had a lot of fun through
conversations and entertainment. It was such a huge success, that in 2018, we began preparing earlier for the 2nd Irlen family picnic. This year, we had Irlen Family Picnics in 27 different Brazilian cities, 1 city in Italy and 1 in the USA.
We had a wonderful exchange of experiences, information, music, dance, entertainment for children and teens. The atmosphere was contagious to
everyone; once more we had parks and squares filled with color and the number of attendees only grew. Now it is a tradition! Every year we will repeat it on the 1st Sunday of August and we are stimulating people through Facebook and WhatsApp to expand the event around the world, as it happened in Houston, Texas – USA and Bergamo, in Italy, showing the world that Irlen Does Exist!
2018 – Cities which held the Irlen Family Picnic:
Aracaju – SE, Belo Horizonte – MG, Brasília – DF, Campinas – SP, Cuiabá – MT, Curitiba – PR, Fortaleza – CE, Joao Pessoa – PB, Juiz de Fora – MG,
Macaé – RJ, Maceió – AL, Maringá – PR, Natal – RN, Osorio – RS, Ourinhos – SP, Petropolis – RJ, Porto Alegre – RS, Recife – PE, Resende – RJ, Rio de
Janeiro – RJ, Salvador – BA, São Bento do Sul – SC, São Paulo – SP, Vale do Paraíba – SP, Vitoria – ES, Wenceslau Braz – PR
These are just a few of the hundreds of photos from the big day!
More information and pictures from the annual Irlen Family Picnics at https://www.facebook.com/pg/irlenexistesim/photos/?tab=album&album_id=248709902428658
Ana Paula’s blog: https://irlen.blog/
ISF is excited to kick off our summer fundraising campaign! August 1st is the official start to the 30-day fundraising campaign, in conjunction with the Irlen Parent Connection Facebook Group. We have a lofty $10,000 goal, and every cent goes towards Irlen scholarships for individuals from low-income families. As you know, Irlen Spectral Filters change lives, and we’re making sure everyone who needs Irlen Spectral Filters can get them.
Here is the link to the fundraiser: https://www.chuffed.org/project/color-me-curious. (You’ll get a free t-shirt with a $30 donation).
Help us reach our $10,000 goal by making a donation, sharing the link with others, or, joining our team by clicking the red button at the bottom of the fundraiser page that says “Create Your Own Fundraiser Page”, so that you can customize it with your own story, thoughts, information, etc. to send to the people you know.