Some individuals experience symptoms of a disorder named after Alice in Wonderland, a character who would change size after eating or drinking something.
Nine-year-old Josh Frith was in the car with his parents when he witnessed a strange occurrence happening to the buildings on both sides of the street: they seemed to be growing larger. When he told his mother, Sonja, she was puzzled. To her eyes, the buildings looked the same as always. Sonja says, “As the car moved, Josh felt that the buildings on both sides suddenly became bigger and he felt that the entire space was taken up, and you were stuck between them.”
This wasn’t the first time that it happened. Josh, who is from Australia, one day after returning from school, told his mother that the faces of his teachers had become disproportionately larger compared to their bodies, and that the walls of the classroom had become longer and farther away from him. Josh says that in one instance, while playing chess at school, he realized that his fingers were getting larger and wider to the point where he felt he couldn’t pick up the chess pieces.
According to Sonja, these strange events became much scarier at night; the edges of Josh’s room would change, the walls would shake and take up the entire space, and it would cause him to have a nightmare. She says that sometimes, he would say that her voice sounded different, and he would hear it in a softer tone and slower speed. It took about two years for Josh’s family to realize what was going on. He was suffering from a rare disorder called Alice in Wonderland Syndrome, which is sometimes called Todd’s Syndrome.
According to BBC, Alice in Wonderland Syndrome (AIWS) affects the way individuals perceive the world around them and can distort their experience of their own body and the space it occupies. Symptoms of this syndrome may include visual distortions and distortions in time. Imagine seeing people’s faces appear stretched and dragon-like. This symptom is just one of 40 types of visual distortions that are characteristic of AIWS.
Some patients also report seeing various body parts added to the bodies of the people in front of them, such as a short arm added to an individual sitting across from them. Other symptoms include observing people or objects moving slowly, quickly, or remaining stationary.
The hearing of patients with AIWS can also be affected. Patients may become aware that those around them are speaking unusually slowly or quickly. They may also report seeing objects or parts of their body shrinking or enlarging, creating a sense that their body size is changing, much like Alice experienced after drinking a special potion that made her smaller or eating a cake that made her bigger. Perhaps Carroll himself was inspired by his own visual disturbances caused by migraines, which often result in temporary visual disturbances in sufferers. Some have also suggested that the author may have suffered from AIWS due to epilepsy, substance abuse, or even an infection.
Although Alice in Wonderland Syndrome was officially described by doctors as a distinct syndrome in 1955 and some of its symptoms had even been recorded earlier, the exact causes of this syndrome are still a mystery. While researchers are trying to uncover the secrets of this strange condition, they hope to gain vital insights into how the brain interprets the world around us.
Due to the signals of our various senses, which are combined with our past experiences, each of us perceives the world in a different way from others. In other words, we all exist in our own unique reality. Oliver Sacks, a neurologist and author of a book about Alice in Wonderland Syndrome, says: “Perception is not a passive process of just seeing, hearing, feeling, tasting, or smelling, but an active process. The brain acts based on our past experiences and biases on incoming sensory stimuli. Our perception of stimuli affects our actions, and our actions affect what we perceive.”
But sometimes perception may be disrupted, such as when individuals suffer from delusions or hallucinations. When our perception of ourselves and the world we live in is distorted, we are at risk of losing our sense of self and developing “personality disintegration” disorders. It is even possible to perceive the world as unreal and suffer from “reality disintegration” disorders.
In the past, Alice in Wonderland Syndrome was generally considered a relatively harmless condition that did not require medical intervention. Some symptoms have been reported in the general population, and about 30% of adolescents report having mild or transient experiences of the syndrome. Some cough medicines and illegal hallucinogenic substances are also stimulants of this condition.
Sensory distortions of Alice in Wonderland syndrome can also lead to abdominal migraines in individuals. Abdominal migraine shares common triggers and relievers with regular migraines, but involves severe abdominal pain that appears periodically and lasts for 2 to 72 hours. Often, individuals with abdominal migraines have a family or personal history of migraines.
Although sometimes our perception of the world can have another hidden cause. A wide range of causes have been suggested for Alice in Wonderland Syndrome, including stroke, brain tumors, aneurysm (enlargement or bulging of the blood vessel wall due to weakness of the blood vessel wall), viral infections, epilepsy, migraines, eye diseases, and psychiatric disorders such as depression and schizophrenia. This condition has also been linked to infections such as Lyme disease, H1N1 flu, and coxsackie virus B1. One study even identified it as one of the effects of Creutzfeldt-Jakob disease (CJD), a rapidly progressive and often fatal neurodegenerative disorder.
Yan Dirk Blom, a clinical psychologist and professor of clinical pathology at Leiden University in the Netherlands, who is one of the researchers who has specifically studied Alice in Wonderland Syndrome, emphasizes that doctors should take patients who describe these symptoms seriously. Blom says that the diagnosis and recognition of Alice in Wonderland Syndrome has not made much progress in the past few decades, and this problem may go unnoticed in patients for years.
Gillian Harris, from Pulborough in West Sussex, England, was diagnosed with Alice in Wonderland Syndrome six years ago at the age of 48, having suffered from it since childhood. She says, “As a child, I sometimes felt that everything was further away from me, and when I was a teenager, I realized that my hands and feet were very large.” She was diagnosed with epilepsy at the age of about 16 and received treatment.
However, there is little research that provides clues as to why Alice in Wonderland Syndrome affects some people but not others. Bloom says, “Genetics may play a role in creating sensitivity to Alice in Wonderland Syndrome in some individuals, although this requires empirical confirmation.”
In children, encephalitis caused by the Epstein-Barr virus is the most common cause of Alice in Wonderland Syndrome, while in adults it is often associated with migraines.
Brain imaging shows that Alice in Wonderland Syndrome may be due to a malfunction in an area of the brain called the “gyrus parahippocampalis posterior”. In this area, visual and spatial information is combined with signals about touch, body position, and pain. Changes in this area due to injury, nerve damage, or inflammation may alter the way the brain interprets signals.
Bloom says many studies need to be done to understand what is happening in the brains of patients with Alice in Wonderland Syndrome. But he believes that this condition can provide vital clues about how the brain integrates information about the world around us. Bloom says, “I think AIWS can teach us that the process of perception is much more complex, subtle, and balanced than we usually imagine.”
Sometimes, when even relatively large parts of the brain are damaged or even absent (such as in prospopometamorphopsia caused by bullet wounds, which usually resolves within a few weeks), perception is not very affected, while in other cases, dysfunction of small groups of nerve cells can lead to significant and sustained changes in perception.
This syndrome teaches us that the network required for visual perception has large parts that can be put aside or compensated for with other parts, while other parts of it seem completely vital if we want to be able to perceive fundamental aspects such as faces, lines, colors, and motion properly.
However, conducting brain studies to investigate what happens in the brains of patients with this syndrome is not easy. Kastenbauer says, “One of the major obstacles is the rarity of AIWS and the transient nature of the symptoms. It’s difficult to scan a patient’s brain while experiencing these symptoms.”
While sensory distortions caused by Alice in Wonderland syndrome can be somewhat confusing in some cases, in some cases, these symptoms can be terrifying and put those who suffer from them at risk. Gillian, who is now 54, describes, “When the symptoms occurred frequently, I didn’t want to ride the train or bus alone for fear of symptoms happening while on the platform or getting on the bus. If you have this condition, you lose your independence. This condition affects everything.”
Studies show that in most cases, cases of Alice in Wonderland syndrome are resolved over time, although sometimes depending on the underlying cause, symptoms may recur.
Gillian takes the highest dose of two anti-seizure drugs and not only does not have seizures, but has been free of AIWS for two years. On the other hand, Josh still experiences symptoms of the syndrome, but has developed mechanisms to cope with it. Sonja says, “Looking out the window or looking at the mirror helps him because he looks at his facial features in the mirror and it helps him shorten that period of the syndrome.” Josh now carries a small mirror with him when he goes out so that if he needs to test reality, he can use it.