April is Autism Acceptance Month. I thought I would take the opportunity to talk about something other than allergies. I have Meares-Irlen Syndrome, AKA Visual Stress AKA Scotopic Sensitivity Syndrome. This is a frequent co-morbid condition with autism, and about 15% of the neurotypical population will have it too. Meares-Irlen Syndrome is however under diagnosed. I wasn’t diagnosed until I was 22 years old. I would really like to save other people the difficulties I had through out my childhood.
I want you to experience what it was like having Meares-Irlen Syndrome, when I was a child at school. Firstly, move your head from side to side. What happens? Hopefully, nothing! Your brain knows that you are moving your head and stabilises the visual image you see. When I move my head from side to side, the whole world appears to whoosh from side to side. This matters because, as we walk along, our weight shifts from one foot to the other so our heads move from side to side. When I walk along, it is like walking on the deck of a rolling ship tossed on a stormy sea. With each step, my whole visual field lurches as my weight shifts to one side. This is just about manageable in a corridor. I can use the walls as reference points. Now, imagine that you are running across a field. The hedges around the field are far away, it becomes harder to run in a straight line and to keep your balance. Now imagine it’s not just an empty field, it’s a playground. There are other children running around too. The problem is that my eyes can not smoothly track moving objects. I can’t keep my eyes on these moving children accurately so I make mistakes and bump into them. Their movement makes it harder to deal with my moving visual field too. Now imagine, it’s not just a playground, it’s a netball pitch and I am playing a game. Someone has thrown the ball at me. I reach my hands out, but my eyes can’t follow the ball as it comes closer and closer towards me. The hard, heavy netball hits me on the nose, and my sports teacher says “If you had just been concentrating then that wouldn’t have happened.” I can say with absolute faith that if I had concentrated on that ball anymore then it would have spontaneously combusted by the power of my mind! I just couldn’t do it.
Unsurprisingly, I struggled through my whole childhood with fairly basic tasks. I couldn’t play sports or read music. I was unable to do basic arithmetic because I couldn’t easily differentiate between numbers; 3 and 8 looked similar, and so did 2 and 5. I was just guessing the answers. Crossing the road was a crapshoot. Amazingly, my reading and spelling was good so nobody really noticed.
I managed to do quite well through school and went to university. It was when I started postgraduate study that things got really tough. I was struggling to keep up with the reading required. I was very lucky that someone from Student Services took me seriously when I asked for their advice. She decided to screen me for Meares-Irlen Syndrome. This is done by asking the person to read passages with different coloured plastic transparent overlays over the text. I will never forget the moment that she covered the text with a blue overlay. Suddenly, the text stood still. I realised that I had spent my whole life trying to read as the letters moved from the foreground to the background and back again repeatedly. Suddenly, the letters stayed in the foreground and were clearly visible against the white background. More than that, my eyes felt like they were being bathed in a cooling waterfall. I thought everyone’s eyes were irritated and tired all the time; mine always had been! If you want to see what it is like reading with Meares-Irlen Syndrome, then click on this link to a fantastic video from the Irlen Syndrome website. I was referred to an optometrist, who confirmed the diagnosis. Unbelievably, this service has just been cut in our local health authority, a short-term saving in the name of austerity for a long-term price paid by undiagnosed children.
So what signs of Meares-Irlen should you look out for in yourself or others?
- Looking in a series of short glances
- Looking away from visual targets
- Squinting or looking down, or closing one eye
- Sideway glances
- Poor eye contact
- Rubbing or pushing on eyes
- Behaviour changes in bright lights or sunlight
- Poor spatial or body awareness
- Light sensitivity
- Difficulties with stairs, escalators, or catching balls
- Poor coordination
As this is an Autism Acceptance month post, I should point out that some autistic people might show less obviously linked behaviours, such as fluttering their fingers before their eyes, or by being mesmerised by colours, patterns, shadows or light. I noticed a pre-verbal child at the Allergy Brothers’ school, who always touched both walls in a corridor before walking down it. His mother told me that it was his ritual, but I wondered if he had Meares-Irlen Syndrome. It seemed to me that he was calibrating himself and checking where the walls were. When I suggested this to his Mum, it turned out that she had used an overlay at school herself. Meares-Irlen Syndrome runs in families so maybe her son had those difficulties too, but he was unable to tell anyone why he needed to touch the walls.
I have already spoken about one way that people with Meares-Irlen can manage their condition, by using coloured overlays. Obviously, this is most useful for reading. It doesn’t really make it any safer to cross the road! Luckily for me, my postgrad office was only a few doors down from Professor Arnold Wilkins’ office at the University of Essex. He kindly offered to test me and give me appropriate coloured lenses for free. This made a big difference to my life. Although I was disappointed that my best lens colour was a dark green, that was strongly reminiscent of the Wizard of Oz! It is also possible to wear coloured contact lenses.
A few year’s later, I went to a talk by Professor John Stein at The Royal Institute. He was talking about his research with fish oils and dyslexia. I was a little suspicious; it seemed fishy that the brother of Rick Stein, the well-known owner of fish restaurants, was suggesting that fish oils might help! I figured that I had nothing much to lose, and tried it for a few weeks. I soon found that I no longer needed my overlays or coloured glasses as I could see fine. Eventually, I even managed to pass my driving test. I had found trying to drive a car to be impossible with Meares-Irlen Syndrome. Now, I take a daily dose of omega oils (vegan versions are available, as well as the traditional fish ones), and it is almost like I don’t have Meares-Irlen Syndrome anymore.
There are ways to manage living with Meares-Irlen Syndrome, and many of these ideas are applicable to children in school, as well as adults and children at home. I realised that, without consciously thinking about it, I had decorated our home to be Meares-Irlen friendly. This is a photo of our kitchen (apologies for the as yet unpainted kitchen door; it has just been put in).
You can see that the paintwork is darker than the walls. This clearly shows where the walls end and floor or door begins; useful information for someone with Meares-Irlen Syndrome, who is trying to walk around this environment. The walls are deliberately plain to avoid any unpleasant visual effects. The colour scheme is generally muted, but the table and cooker are both red so they pop out against the background; the table so I can avoid walking into it, and the cooker for safety. The decoration in the room is limited to one area so it is not too distracting. These features could be easily replicated in a school to help students with Meares-Irlen Syndrome.
Most people think of Meares-Irlen Syndrome in relation to reading, but it affects all aspects of a person’s life. I started this blog with a description of why I found sport so distressing at school. I still struggle with sports involving visual acuity. I can’t time a tackle in a football game safely or throw a dart accurately. However, I have found martial arts to be really helpful. Training is often regimented so people are standing in rows and stay in their specific spot through out the training session. It is even possible to compete in kata or forms, where participants carry out choreographed series of movements individually or in pairs. This is so much less visually difficult than twenty two people running around a football pitch.
Another skill I still can not master is reading music. The notes just float around the stave for me. However, I was able to learn music theory alongside the Allergy Brothers when they were learning via the Stave House method! The Stave House method is based on Montessori ideas, such as using large scale model staves, that I could access. I find I can read tablature for guitar; the numbers do not float above the lines as much as the dots in traditional music does. Another alternative is to learn unpitched percussion as the notation for this is also easier to read.
Ultimately, many of the problems of having Meares-Irlen Syndrome can be overcome, but only if you know you have the disorder. This is why it is so very important that people are aware that Meares-Irlen Syndrome exists. I hope you forgive me for wandering off topic; normal service will resume. The next post is guaranteed to be about cake!