Imagine you’re just drifting off to sleep when you suddenly realize that your hands have swollen to monstrous size, and the furniture in your bedroom has shrunk so small it could fit in a dollhouse.
Such an occurrence may be impossible, but to the people with Alice in Wonderland Syndrome, who perceive these experiences of growing and shrinking, it’s very, very real.
AIWS is a neurological condition that affects perception and typically occurs in children. Not much has been written about AIWS in peer-reviewed papers, but Dr. Grant Liu, a pediatric neuro-ophthalmologist who’s studied AIWS for years, says it’s likely more widespread than doctors expect.
“There are a lot of kids with this,” he told The Atlantic. “I think it’s a lot more common than we think.”
People with AIWS typically experience some combination of macropsia (seeing things as too big), micropsia (seeing things as too small), pelopsia (seeing things closer to them) and teleopsia (seeing things farther from them).
The syndrome got its name from psychiatrist John Todd who published a paper on the mysterious condition in 1955 and dubbed it Alice in Wonderland Syndrome after Lewis Carroll’s protagonist, who experiences situations of shrinking and growing in “Alice’s Adventures in Wonderland.”
A difficult diagnosis
Diagnosing a patient with AIWS can be difficult because the syndrome isn’t apparent through brain imaging once an episode has passed. Neurologist Sheena Aurora was the first to scan a patient during an episode, and she discovered that electrical activity was causing abnormal blood flow to the parts of the brain that control vision and process shape and size.
Because there’s no way to test for AIWS, Liu has to rely on what his young patients tell him in order to make a diagnosis.
“What interests me most is that the symptoms different kids describe are very, very similar,” he said. “This is why I don’t think they’re faking it.”
The syndrome hasn’t been widely studied, which Liu attributes to the fact that AIWS episodes are harmless and rarely debilitating. Typically, symptoms appear between the ages of 5 and 10 and disappear by the time patients are in their late teens.
Neurologist Owen Pickrell thinks that because episodes tend to occur at night, they may be triggered by changes in sensory output (the lack of light and noise before we fall asleep) or by chemical changes in the brain preceding sleep.
There’s currently no way to treat AIWS, but researchers are focusing on what causes it.
Researchers believe that migraines, epilepsy and viral infections are all associated with the syndrome, and some think that bouts of perceived shrinking and growing objects may even be a sensory warning before the onset of a migraine.
There’s also a possibility that AIWS is genetic; however, it can be difficult to get people — especially adults — to admit to experiencing its symptoms.
“A lot of family members didn’t own up to it on the first go-round,” Liu told The New York Times. “They were almost too embarrassed. People want to be told that they’re not crazy.”
As for what could’ve inspired Lewis Carroll to write about Alice’s own size-related adventures, there’s suspicion that he might have been writing about his own experiences. He often wrote about his migraines in journals, and researchers think he might have had epilepsy.