Small talk: Alice in Wonderland Syndrome (Revisited)

Last week, I was contacted by the journalist Abigail Moss about a previous blog that I wrote on Alice in Wonderland Syndrome (AIWS). AIWS is a non-contagious disorientation disorder and refers to when a person’s sense of body image, vision, hearing, touch, space, and/or time are distorted. AIWS sufferers typically experience micropsia (a neurological condition that affects human visual perception in which objects are perceived to be smaller than they actually are and make people feel bigger than they are) or macropsia (a neurological condition that affects human visual perception in which objects are perceived to be larger than they actually are and makes people feel smaller than they actually are).

Moss suffers from AIWS herself and has described her experiences both on camera (for instance in a short YouTube news piece and in numerous news articles such as one in the Daily Mail). Moss also sent me a first-person account of AIWS that she published in the online magazine Planet Ivy. Here are some of the things she recounted:

Extract 1: “When I was about five years old, I started to experience strange visual and sensory hallucinations. My hands and legs would seem too big for my body and the room around me would start to shrink inwards. All movements and sounds would seem extremely fast and hugely exaggerated, giving everything an odd feeling of urgency. This would last about 20 minutes and slowly fade away, and happened about four or five times a week…Luckily, my dad knew exactly what I was describing…He’d experienced the same thing as a kid. I haven’t outgrown it…but it doesn’t happen as often – maybe only five times a year”.

The first doctor suggested she might have a form of epilepsy but after that proved negative she was never diagnosed with anything official. Since then, other medics have suggested that she may have a sleep disorder or some kind of schizophrenia. It wasn’t until she was in her early twenties that she came across something that fitted her symptoms:

Extract 2: “Last year a tiny 50-word inset in a newspaper supplement caught my eye. ‘Alice in Wonderland Syndrome’ the heading read, and underneath it, a perfect description of my experience…I joined a Yahoo forum for ‘AIWS sufferers’…Countless fellow sufferers got in contact, all describing the same thing. Their descriptions were remarkably unvaried and it was immediately obvious this was the same thing I experience: ‘My body felt minuscule’, ‘Sounds were amplified’, ‘Everything was bigger and smaller at the same time’.”

The article outlined the many psychiatrists and psychologists Moss had visited about her condition with all the experts she saw claiming that they had never heard of AIWS. While the condition is rare, the condition has been well documented in the medical and clinical literature (see ‘Further reading’ below) so I was quite surprised that the experts she visited couldn’t have at least spent some time reading up on the syndrome. She then went on to say:

Extract 3: “My brain does something extremely weird, and nobody – not even the world’s leading bodies in the study of brains – can tell me what this is or why it happens. For me, this isn’t a problem, I don’t want to get rid of my episodes – they’re an interesting talking point and everyone knows writers are basically quite boring people. The experience, when it does pop up, doesn’t actually bother me or affect my day-to-day life”.

Moss wanted to ask me a few questions about my understanding of AIWS and how much is now known about it. She knew this wasn’t my primary area of expertise, but said that any opinions I might be able to offer would be invaluable to the article she was writing. I told her that my article on AIWS was written in a journalistic capacity rather from any position of expertise but she still wanted me to answer a few questions. Moss asked me three questions and I thought I would use this blog to share my full answers with my readers.

Question 1: “In my research I’ve found it almost impossible to find solid answers about what causes AIWS. Can you offer a view on what makes this condition so difficult to pin down?”

AIWS has been reported in the psychiatric and psychological literature since the early 1950s. However, since the first papers in the topic less than 20 papers have ever been published and all of them are case reports. Finding ‘solid answers’ based on so few cases is therefore inevitable. The literature is also biased because it is (a) based on those sufferers who seek out medical assistance, and (b) based on those doctors or clinicians that have written the cases for publication. If people don’t seek help and/or there cases remain unwritten, there is little chance if finding ‘solid answers’.

Secondly, the symptoms are not always identical which is why it is referred to as syndrome (that is, a group of symptoms that together are characteristic of a specific disorder or disease, or a predictable, characteristic condition or pattern of behavior that tends to occur under certain circumstances). Syndromes typically have many different causes which again means it is difficult to find ‘solid answers’.

Finally, given that the experiences (like your own) are often short-lived, it is very rare to be able to monitor people neurologically. The few published cases are based on chronic sufferers (who may not be representative of the vast majority of AIWS sufferers). Several neurologists have done M.R.I.s on patients with the condition, though once the bout has passed, there’s usually no sign of unusual brain activity. I read that Dr. Sheena Aurora was the first to scan the brain of someone — a 12-year-old girl — in the middle of an episode. According to Dr. Aurora, electrical activity caused abnormal blood flow in the parts of the brain that control vision and process texture, shape and size.

The case studies that I have read have provided lots of possible reasons for AIWS but there is no consensus and they could all be true (as having the same symptoms doesn’t mean there has to be the same cause). Some research appears to indicate that AIWS can be due to abnormal amounts of electrical activity that causes blood to flow abnormally in the brain areas that process texture and visual perception. AIWS has been associated with migraines, severe depression, and (in extreme cases) brain tumours. Case study research has indicated that AIWS manifestations are due to disturbed function of either medial temporal, hippocampal, tempro-occipital or tempro-parieto-occipital regions of the brain. Unfortunately, chronic AIWS is untreatable and time is the only healer. However, sharing experiences with other sufferers is also thought to be therapeutically beneficial

Question 2: “Is academic disagreement just part and parcel of all psychological conditions or does AIWS seems particularly open to discussion?”

I don’t think there is ‘disagreement’ as no two clinicians or psychiatrists have ever published papers examining the same individuals. They have all published papers based on the AIWS sufferers that they themselves saw and that who came in seeking help. All of the explanations could be correct as syndromes have multiple causes. This is not disagreement. It’s simply a case of multiple possible causes.

Question 3: “I have spoken to a large number of people who also say they also experience AIWS – how useful or valid do you think it would be to think of AIWS as more of a mental phenomenon than a syndrome, comparable with something like déjà vu, for example?”

The word ‘large’ is what we psychologists call a ‘fuzzy quantifier’ as ‘large’ to one individual is small to another. If you have spoken to 100 other sufferers worldwide I would say this is very very small. The condition appears to be rare although in one of my other areas of research, we have demonstrated that a small proportion of video gamers experience disorienting visual effects (that we call game transfer phenomena) like AIWS so such phenomena may be multi-faceted and may arise from specific activities (such as excessive and immersive game playing).

AIWS should not be compared with déjà vu as most scientific evidence suggests that déjà vu is an anomaly of memory and totally different from AIWS on a neurological level (but I’m not an expert on déjà vu and am only basing my opinion on what I have read in the psychological literature). However, there may be some conditions (such as schizophrenia and temporal lobe epilepsy) where individuals may experience both AIWS and déjà vu but these are symptoms of a specific medical disorder. Most individuals that have experienced déjà vu (as many as two-thirds of the population in some studies) and AIWS (very rare) do not have any underlying serious medical conditions.

I don’t know if any of my responses to Moss were of help either in relation to her own experiences or in writing her article but I was pleased with the observations I had made.

Dr Mark Griffiths, Professor of Gambling Studies, International Gaming Research Unit, Nottingham Trent University, Nottingham, UK

Further reading

Bui, E., Chatagner, A. & Schmitt, L. (2010). Alice in Wonderland Syndrome in major depressive disorder. Journal of Neuropsychiatry and Clinical Neurosciences, 22, 352.e16-352.e16.

Cinbis, M. & Aysun, S. (1992). Alice in Wonderland syndrome as an initial manifestation of Epstein-Barr virus infection (case report). British Journal of Ophthalmology, 76, 316.

Eshel, G.M., Eyov, A., & Lahat, E., et al (1987). Alice in Wonderland syndrome, a manifestation of acute Epstein-Barr virus infection (brief report). Pediatric Infectious Diseases Journal, 6, 68.

Kew, J., Wright, A., & Halligan, P.W. (1998). Somesthetic aura: The experience of “Alice in Wonderland”. The Lancet, 351, 1934.

Kitchener, N. (2004). Alice in Wonderland Syndrome. International Journal of Child Neuropsychiatry, 1, 107-112.

Kuo, Y, Chiu, N.C., Shen, E.Y., Ho, C.S., Wu, M.C. (1998). Cerebral perfusion in children with “Alice in Wonderland” syndrome. Pediatric Neurology, 19, 105-108.

Lahat, E., Eshel, G., & Arlazoroff A (1990). “Alice in Wonderland” syndrome and infectious mononucleosis in children (letter). Journal of Neurology, Neurosurgery and Psychiatry, 53, 1104.

Lambert, M.V., Sierra, M., Phillips, M.L. & David, A.S. The spectrum of organic depersonalization: A review plus four new cases. Journal of Neuropsychiatry and Clinical Neuroscience, 14, 141-154.

Podoll, K., Ebel, H., Robinson, D., & Nicola, U. (2002). Obligatory and facultative symptoms of the Alice in wonderland syndrome. Minerva Medicine, 93, 287-293.

Podoll, K. & Robinson, D. (1999). Lewis Carroll’s migraine experiences. The Lancet, 353, 1366.

Rolak, L.A. (1991). Literary neurologic syndromes. Alice in Wonderland. Archives of Neurology, 48, 649–651.

Todd, J. (1955). The syndrome of Alice in Wonderland. Canadian Medical Association Journal, 73, 701–704.