Kat Lougheed had an odd child­hood: re­al­ity would dis­tort and twist, mak­ing her feel the size of a hob­bit. Alice in Won­der­land Syn­drome is truly bizarre – but helps us un­der­stand the mind of an anorexic.

They say it is what’s in­side that counts. Yet how we view our­selves al­ways seems linked to what we see in the mir­ror. Close your eyes and the ‘ in­ner you’ nav­i­gat­ing your imag­i­na­tion prob­a­bly looks a lot like the outer ver­sion ev­ery­one else sees (if per­haps a bit bet­ter-look­ing). But very odd things start to hap­pen when the nor­mal link be­tween th­ese two ver­sions of ‘ you’ gets bro­ken. Take a jour­ney with me down the rab­bithole…

As a child, I oc­ca­sion­ally ex­pe­ri­enced the un­set­tling sen­sa­tion that my limbs had grown to a size ap­proach­ing that of a small planet. I now know that this wasn’t the onset of in­san­ity, or the be­gin­nings of my me­ta­mor­pho­sis into a su­per­hero, but a con­di­tion known as Alice in Won­der­land Syn­drome (AIWS). For a suf­ferer like me, AIWS may mean you per­ceive your body to be bal­loon­ing, shrink­ing, or dis­tort­ing in shape. A truly bizarre con­di­tion, the cause is of­ten un­known al­though it has been linked to some vi­ral in­fec­tions in­clud­ing in­fluenza. It is also some­times ex­pe­ri­enced by epilep­tics or dur­ing a mi­graine – mak­ing it tempt­ing to spec­u­late that mi­graine-suf­ferer Lewis Car­roll found in­spi­ra­tion for his fan­tas­ti­cal sto­ries from this con­di­tion. Of course, his lau­danum habit may also have helped.

The Alice in Won­der­land Brain

What goes on in the brain of an AIWS suf­ferer to make them be­lieve they are shape-shift­ing is a bit of a rid­dle – but one that Kath­leen Brumm and her col­leagues from San Diego State Univer­sity have tried to solve. They used mag­netic res­o­nance imag­ing on a 12-year-old boy with vi­ral-onset AIWS to watch what goes on in the brain (a tech­nique called func­tional MRI). Dur­ing an AIWS episode they saw some un­usual ac­tiv­ity in the re­gions of the brain in­volved with mak­ing sense of what we see and for pro­cess­ing the sen­sa­tions we feel. The boy’s brain seemed to be misfiring and in­cor­rectly pro­cess­ing in­for­ma­tion ar­riv­ing from his eyes, which made him think that ob­jects around him were much smaller than they were in re­al­ity. When AIWS is trig­gered from an in­fec­tion (as with my episode) it seems likely that the virus in­flames such brain ar­eas, and ef­fec­tively mess­ing around with the nor­mal fir­ing pat­terns. But fully un­der­stand­ing a rarely-di­ag­nosed con­di­tion isn’t an easy task, es­pe­cially when the num­ber of peo­ple who suf­fer AIWS (in the ab­sence of other con­di­tions) is van­ish­ingly small. I grew out of my AIWS, but a few can be stuck with this some­times de­bil­i­tat­ing con­di­tion for­ever.

Voodoo dolls and phan­tom limbs

It turns out that Kath­leen Brumm’s study is just one of many where a spe­cific area of the brain – called the pari­etal lobe – has been linked to prob­lems with the mind’s con­struc­tion of body im­age. Build­ing our in­ner per­cep­tion of our outer self re­lies on our brain build­ing a com­plete point-for-point map of our body (see im­age). Like a gi­ant voodoo doll, the phys­i­cal body trans­mits in­for­ma­tion from dif­fer­ent body parts to this map, which acts as a switch­board, piec­ing to­gether phys­i­cal sen­sa­tions to form our per­sonal ex­pe­ri­ence of the world. How­ever, the brain map on the in­side doesn’t al­ways match up with the body on thr out­side, which can lead to us per­ceiv­ing our­selves dif­fer­ently from how we ac­tu­ally are.

One of the lead­ing names in this field of body im­age re­search is Vi­laya­nur Ra­machan­dran from the Univer­sity of Cal­i­for­nia. His work rev­o­lu­tionised our un­der­stand­ing of phan­tom limbs – the phe­nom­e­non that causes am­putees to con­tinue to feel the pres­ence of an arm or leg long af­ter it has been re­moved. As a mem­ber of his lab­o­ra­tory ex­plained, “Our brain has to dy­nam­i­cally up­date our in­ter­nal rep­re­sen­ta­tion of our body, but this doesn’t hap­pen in­stan­ta­neously.” It seems that, in its ef­fort to make sense of a sud­den loss of sen­sory in­for­ma­tion, an am­putee’s brain ef­fec­tively ‘bor­rows’ signals and sen­sa­tions from other parts of the body to trick it­self into believ­ing the limb is still present. But what hap­pens when it is the in­ner map that is ‘miss­ing a limb’? Body In­tegrity Iden­tity Dis­or­der is a rare con­di­tion in which pur­port­edly sane peo­ple find the pres­ence of a healthy limb so in­tru­sive that they ex­press the de­sire for it to be chopped off – of­ten seek­ing an am­pu­ta­tion. In th­ese cases, the brain’s sense of body own­er­ship ap­pears to not in­clude the of­fend­ing body part. Even more dis­tress­ing, a dis­or­der known as Co­tard’s syn­drome takes this feel­ing of ‘not be­long­ing’ to its ex­treme: a per­son be­comes so dis­con­nected with the outer ver­sion of them­selves that they be­lieve them­selves to be dead, or de­cay­ing, or some­times im­mor­tal – de­spite all ev­i­dence to the con­trary.

A link to anorexia?

While such dis­or­ders have been linked to changes in nor­mal brain ac­tiv­ity (as Kath­leen Brumm’s work found), cause and ef­fect can be dif­fi­cult to tease apart. What comes first — the changes in the brain or the delu­sional be­hav­iour? Eat­ing dis­or­ders are one case in point: Work­ers in Vi­laya­nur Ra­machan­dran’s lab­o­ra­tory have pro­posed that sim­i­lar brain ‘er­rors’ could par­tially ex­plain eat­ing dis­or­ders such as anorexia ner­vosa. Author of the study Laura Case has con­sid­ered the fol­low­ing co­nun­drum: peo­ple with anorexia feel large, but why can’t they look in a mir­ror and use the ac­cu­rate vis­ual im­age of them­selves to cor­rect their dis­torted sen­sa­tions? Her the­ory is that anorex­ics have dif­fi­culty in­cor­po­rat­ing sen­sory in­for­ma­tion into a cor­rect body im­age. If true, this ex­pla­na­tion adds an ex­tra di­men­sion to the well-known psy­cho­log­i­cal is­sues that oc­cur in such dis­or­ders.

‘Who in the world am I? Ah, that’s the great puz­zle!’ says Alice.

In the words of Fran­cis Crick, co-dis­cov­erer of the struc­ture of DNA: “You, your joys and your sor­rows, your mem­o­ries and your am­bi­tions, your sense of per­sonal iden­tity and free will, are in fact no more than the be­hav­ior of a vast assem­bly of nerve cells and their as­so­ci­ated molecules. As Lewis Car­roll’s Alice might have phrased it, ‘ You’re noth­ing but a pack of neu­rons.’” Each of us faces the ‘great puz­zle’ of who we are and how we see our­selves. Thanks to the work of peo­ple like Brumm and Ra­machan­dran, we now pos­sess some, but not all, of the pieces.


• Brumm K. et al. Func­tional MRI of a child with Alice in Won­der­land syn­drome dur­ing an episode of mi­crop­sia. J AAPOS. 2010;14(4): 317–322.

• Ra­machan­dran VS. et al. Synaes­the­sia in phan­tom limbs in­duced with mir­rors. Proc Biol Sci. 1996;263(1369):377-86.

• Case LK., et al. Di­min­ished sizeweight il­lu­sion in anorexia ner­vosa: ev­i­dence for vi­suo-pro­pri­o­cep­tive in­te­gra­tion deficit. Exp Brain Res. 2012;217(1):79-87.

• Ra­machan­dran, VS. Con­scious­ness and body im­age: lessons from phan­tom limbs, Cap­gras syn­drome and pain asym­bo­lia. Phi­los Trans R Soc Lond B Biol Sci. 1998; 353(1377): 1851–1859.

LEFT: The lo­ca­tion of the pari­etal lobe.

LEFT: A rough lay­out of how the brain maps out the body’s sur­face sen­sa­tions lo­cated in­side the pari­etal lobe.

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