Acquired Neurodivergence: A Life Full of Surprises

When you live with acquired neurodivergence, as I do since my brain surgery almost thirteen years ago, life is full of surprises. Some of them are exciting and creative, while others throw me way off kilter.

Most of these surprises- particularly the ones that knock me for a loop- have to do with my irregular and often hypersensitive or dysregulated sensory processing.

Sometimes, the reality I experience becomes so strange and distorted that if I weren’t experiencing it firsthand, I would find it hard to believe. And the people around me have no idea what is going on, or why, which can be very harrowing.

Discovering Irlen Syndrome and a Life-Changing Solution

This is exactly what happened to me the other day, when I went for an eye exam. Since my surgery, my visual perception and processing have been dysregulated. My brain perceives and processes light inefficiently, leading to visual stress and distortions in the visual field. Fortunately, after four years of confusion, instability, serious mobility and vestibular issues, light sensitivity, headaches, and exhaustion, I discovered that these issues can easily be alleviated by wearing Irlen spectral filters- or, in layperson’s terms, custom-colored lenses in my glasses.

In addition to my specific issues, four of my children have also benefited from Irlen lenses. Two of them were (mis)diagnosed with dyslexia and ADHD, which disappeared the minute they started wearing Irlen lenses- suddenly they were able to read, and their attention improved significantly. My autistic son also has Irlen lenses, which help regulate his depth perception, overall sense of well-being, and improve his reading abilities.

An Eye Exam That Triggered Visual Chaos

Now, let’s get back to my eye exam. Things started to get “interesting” the minute I entered the optician’s shop. Whenever there are different types of lighting in one space (for example, a combination of natural daylight from the windows, white fluorescent or LED overhead lights, and warm yellow lighting), my vision blurs- even with my Irlen filters. The shop had all three types of lighting. In addition, the exam room was dark, except for the screen projected on the wall that I was supposed to read from and the lights from the other testing equipment.

The optician sat me down and told me to look into the autorefractor, which is a machine that required me to place my forehead and chin on a rest, then look straight ahead at the computerized image on a screen inside the machine. I immediately encountered a problem: I needed to remove my glasses to look into the machine, and the “tube” I had to peer through was lined with black-and-white stripes rather than a solid color. I began to feel dizzy and wanted to look away because the stripes started to wave and dance in front of my eyes.

Somehow, I managed to focus my eyes for a few seconds, just long enough for the optician to gather the data she needed- but I had become nauseous.

The results indicated that I needed a different prescription, and she began testing various lenses to find the ones that suited me best. The problem was that, although they helped me to see crystal clear, everything began to look surreal. I felt as if I had been transported into a weird movie or video game. The shelving next to me looked as if it were about to jump off the wall and smack me on the head. The room appeared to be warped. I felt really uncomfortable, and she suggested I go outside to see if the new prescription helped me see things in the distance clearly.

Surreal Perception and Physical Symptoms

When I walked outside, things looked incredibly clear. I could see the edges of the leaves on the trees from a block away. The buildings across the street and down the block had sharp corners, edges, and window frames. But they didn’t look real. And I had no idea how far apart the buildings were, particularly if one was behind the other. My depth perception had become flattened and distorted, and everything looked surreal and almost animated.

Panic mode was trying to set in, but since I knew my brain was playing tricks on me, and I had experienced these sorts of visual distortions before I had Irlen lenses, I was able to control my fear and take a deep breath. I turned around and went back into the shop and attempted to explain to the optometrist what was happening- only to find out that my neurology had gone crazy, and I was having difficulty formulating speech.

Regaining Balance with Irlen Filters

I also discovered I had lost my balance, so I grabbed the counter and took off the glasses. She took one look at me and urged me to sit down, and brought me a glass of water. I took another deep breath and then asked her to bring me my glasses with my Irlen lenses. Whew!!! When I put them on, I immediately felt a warm feeling of calm wash over me. My visual field stabilized, and within a few minutes, my brain began to regulate, and I regained my ability to speak without stuttering.

The Challenge of Explaining the Unseen

I then found myself in a familiar predicament- how to explain what I had just experienced to someone who has no understanding of what something like Irlen syndrome or unusual neurology or visual perception feels like. It’s one of those things that neurotypical people have difficulty understanding, and in many instances, believe that the person who is experiencing such things is either exaggerating or experiencing psychological problems (I know this for a fact, as both have been said to me over the years- as well as to many other neurodistinct friends of mine).

A Call to Action for Professionals

In addition, I couldn’t help but think about all of the people who are not as fortunate as I am, and who are experiencing similar things, perhaps not as extreme as mine, and don’t know what is wrong with them or how to help themselves. To date, I have only heard of a handful of professionals who are open and willing to learning about Irlen syndrome. They don’t have any concrete solutions to offer, but they don’t want to learn. And this is so unfortunate, because so many people are suffering unnecessarily.

I can’t help but think about all of the people who have experienced things like mild head injuries, concussions, Traumatic Brain Injuries, brain surgery, and have developed light sensitivity or visual perceptual issues. People like soldiers who have returned from the battlefield, or people who have experienced car accidents, or are recovering from strokes or brain tumors, and are desperate for help, with nowhere to turn.  I was practically housebound for four years due to my visual issues, and I went to many different types of doctors, but nobody had any suggestions or solutions for me.

Professionals- neurologists, neuro-ophthalmologists, eye doctors, opticians, neurosurgeons, therapists, and educators- please, don’t overlook the fact that a solution does exist for many people who are experiencing visual distortions, headaches, concentration issues, and light sensitivity. All it takes is an Irlen assessment to fit the appropriate colored spectral filters, which can restore quality of life for your patients and clients.

It is not adequate to just tell them that they are experiencing typical side effects of their injuries, and they need to cope with them. I believe it is your responsibility to do everything you can to improve their quality of life, so please take the time to learn more and share the information with those in your care.

To learn more, check out Irlen.com (worldwide), or Irlen.co.il (in Israel)

#neurodivergent #IrlenSyndrome #VisualProcessingDisorder #BrainInjuryRecovery #SensoryOverload #InvisibleDisabilities #Neurodiversity #SensoryProcessingDisorder