THE WORLD OUT­SIDE

EX­PE­RI­ENC­ING THE WORLD THROUGH THE EYES OF AUTISM

Guru Magazine - - Contents -

Carly has autism and for the first ten years of her life didn’t ut­ter a word. Hav­ing com­mu­ni­cated for the first time via her fa­ther’s lap­top, ex­perts Berit and Kris­tian re­veals what the world looks like through Carly’s eyes.

At the age of 10, Carly Fleis­chmann typed a sim­ple mes­sage on her fa­ther’s lap­top, “Help. Teeth hurt.” Such a mes­sage wouldn’t nor­mally be im­pres­sive if writ­ten by a 10 year old, but for Carly it was dif­fer­ent – she has autism. Un­til that day, Carly was thought to be se­verely men­tally

hand­i­capped. Reg­u­larly throw­ing tem­per tantrums, she would thrash her arms and slam them on the ta­ble. So the sud­den mes­sage star­tled her par­ents. Be­fore those typed words, they had no idea that Carly could hear or un­der­stand any­one. But in that in­stant it be­came ap­par­ent that she may have silently un­der­stood ev­ery­thing said about her, and her hand­i­cap, in the pre­ced­ing years. And it turned out that she had. While Carly’s sud­den com­mu­ni­ca­tion seems re­mark­able, she isn’t unique. In fact, a new the­ory of autism now pre­dicts that all autists are much like Carly. Autism Spec­trum Dis­or­der is a de­vel­op­men­tal dis­or­der char­ac­ter­ized by reg­i­mented be­hav­iour, a pre­oc­cu­pa­tion with small de­tails, and de­fi­cien­cies or delays in so­cial and com­mu­ni­ca­tion skills. In typ­i­cal cases, symp­toms of autism grad­u­ally ap­pear at the age of six months and con­tinue to progress un­til the age of two or three, at which point the con­di­tion re­mains rel­a­tively sta­ble. A lack of re­li­able statis­tics means that the ex­act num­ber of chil­dren with autism is un­known, al­though the best data in­di­cates that it may af­fect up to 1 in 88 in­di­vid­u­als. And since the 1980s the num­ber of chil­dren di­ag­nosed with autism has steadily in­creased, but this sim­ply may be the re­sult of doc­tors be­ing bet­ter able to spot the con­di­tion. It’s far from be­ing a one-size-fits-all con­di­tion: the sever­ity of autism varies greatly among in­di­vid­u­als, al­though there are some tell-tale signs. The most com­mon symp­toms in­clude com­mu­ni­ca­tion dif­fi­cul­ties: in­fants are of­ten slow to start bab­bling, make un­usual ges­tures and re­spond less than other chil­dren. At age two or three, autis­tic chil­dren usu­ally show a lack of in­ter­est in com­mu­ni­cat­ing with oth­ers. Autists are of­ten said to lack the in­tu­ition to tell what an­other per­son is feel­ing, or is im­ply­ing from their words – which can some­times lead to trou­ble: autists are of­ten are un­able to rec­og­nize when their ac­tions might be taken as of­fen­sive.

The dif­fi­cult path to de­bunk the myths

Many re­searchers have spent their en­tire ca­reers strug­gling to find the root cause of autism. Ge­net­ics play a sig­nif­i­cant role, but other fac­tors are also thought to be in­volved – and un­der­stand­ing how th­ese fac­tors in­ter­act

to cause autism is ex­traor­di­nar­ily com­plex. Some re­searchers think that the de­vel­op­ment of autism is due to an ab­nor­mal­ity in the way nerve cells send mes­sages to each other – a dys­func­tion in the small gaps (synapses) be­tween them. How­ever, many re­searchers now be­lieve that the role of ge­netic fac­tors has been over­es­ti­mated. In­stead, we are now see­ing a fresh wave of re­search into the ef­fects of ‘en­vi­ron­men­tal fac­tors’ – med­i­ca­tions, life­style fac­tors, pol­lu­tion, diet, etc. Per­haps the big­gest mis­con­cep­tion has been that child­hood vac­ci­na­tions are linked to autism. This be­lief is mainly the re­sult of a now de­funct and dis­cred­ited study orig­i­nally pub­lished in a

1998 is­sue of the med­i­cal jour­nal The Lancet. Its author, Dr. An­drew Wake­field, was found guilty of in­vent­ing pa­tient data to sup­port his con­clu­sion of a de­fin­i­tive link be­tween autism and child­hood vac­cines. Even to­day, re­search con­tin­ues to be pub­lished show­ing no link be­tween vac­ci­na­tions and autism (most re­cently, one such ar­ti­cle ap­peared in The

Jour­nal of Pe­di­atrics). But there have been other mis­con­cep­tions too. Pop­u­lar in the 1950s, the ‘re­frig­er­a­tor mother the­ory’ claimed that autism was the re­sult of ‘emo­tion­ally frigid’ par­ent­ing on the part of the mother. This type of par­ent­ing was thought to re­sult in a child who suf­fered from guilt and self-doubt, lead­ing to repet­i­tive be­hav­iour, self-iso­la­tion and speech dif­fi­cul­ties. Of­fen­sive and stig­ma­tis­ing, the wholly false ‘re­frig­er­a­tor mother the­ory’ is thank­fully now con­signed to the his­tory books. The present con­sen­sus among re­searchers is that genes are the most im­por­tant fac­tor in the cause of autism: up to 90 per­cent of the risk for de­vel­op­ing autism is due to ge­netic fac­tors. For a long time it was thought that the dis­or­der may be the re­sult of an ‘autism’ gene, but it is now be­lieved that a com­bi­na­tion of causes in­ter­act to pro­duce autis­tic traits – that autism oc­curs when a de­vel­op­ing baby with a ge­netic weak­ness for autism suf­fers some kind of ‘en­vi­ron­men­tal in­sult’ be­fore or af­ter birth. Quite what this in­sult might be, no one knows – and nei­ther do we know which genes lead to the ge­netic weak­ness.

An In­tense New World

Based on lab­o­ra­tory ex­per­i­ments with rats, neu­ro­sci­en­tists Henry and Kamila Markram have pro­posed an en­tirely new the­ory, known as the ‘In­tense World The­ory’, which may rad­i­cally shake up the way we look at autism. This the­ory holds that the brains of autis­tic in­di­vid­u­als are ‘hy­per-con­nected’ and ‘hy­per­ex­citable’. Rather than suf­fer­ing from a deficit in per­cep­tual abil­i­ties, the the­ory sug­gests that autists ex­pe­ri­ence the world so vividly that it be­comes painfully in­tense – so painful that they take refuge by turn­ing in­ward and avoid­ing in­ter­ac­tion with the out­side world. The ‘ In­tense World The­ory’ emerged out of stud­ies in­ves­ti­gat­ing the link be­tween autism and the anti-epilepsy medicine val­proic acid. Val­proic acid has been used to treat bipo­lar dis­or­der, mi­graine headaches and schizophre­nia, but tak­ing it dur­ing preg­nancy can lead to autism and birth de­fects in the child. Sim­i­lar

ef­fects can be seen in other an­i­mals. Rats, for ex­am­ple, demon­strate de­creased so­cial in­ter­ac­tions, in­creased repet­i­tive be­hav­iour, en­hanced anx­i­ety, hy­per­ac­tiv­ity, and al­tered pain sen­sa­tion – the same symp­toms that are found in autis­tic hu­mans. Val­proic acid given be­fore birth also causes dam­age to par­tic­u­lar ar­eas of the brain (the brain­stem and cere­bel­lum)–and this pat­tern of dam­age is also sim­i­lar in rats. Given th­ese sim­i­lar­i­ties, Markram and Markram be­lieve that rats of­fer a par­tic­u­larly good way of test­ing var­i­ous the­o­ries about autism, so they per­formed a se­ries of ex­per­i­ments us­ing rats to ex­plore the ‘In­tense World The­ory’. Study­ing their brains, Markram and Markram found that cer­tain net­works of brain cells in the val­proic-acid treated rats were much more sen­si­tive – they had much more brain ac­tiv­ity – than nor­mal. The re­searchers also found the brain cells in autis­tic rats to have notably

more con­nec­tions: their brains were ‘hyperconnected’. Con­se­quently, the flow of in­for­ma­tion through­out the brain was en­hanced, pos­si­bly ex­plain­ing why the autis­tic rats were much bet­ter at dis­crim­i­nat­ing be­tween aper­tures of dif­fer­ent sizes (sim­i­lar to an autis­tic hu­man’s abil­ity to fo­cus on fine de­tail). Fi­nally, they dis­cov­ered that the amyg­dala, a part of the brain re­spon­si­ble for fear pro­cess­ing, had a ten­dency to form new con­nec­tions, which may ex­plain the in­tense fear the autis­tic rats de­vel­oped. It might seem coun­ter­in­tu­itive that brain ar­eas ex­pe­ri­enc­ing a loss of neu­rons can have ex­cess ac­tiv­ity. One pos­si­ble ex­pla­na­tion in­volves the types of nerve cells that are af­fected: many brain cells have an in­hibitory, or ‘brak­ing’, ef­fect on the rest of the brain. The cere­bel­lum (a re­gion at the back of the head needed for co-or­di­na­tion) has a high con­cen­tra­tion of th­ese ‘in­hibitory’ nerve cells. So it wouldn’t be sur­pris­ing that a loss of this type of brain cell – an eas­ing up of the brakes – would make for an in­crease in brain ac­tiv­ity over­all. The re­main­ing, un­harmed, brain cells of the autis­tic brain would there­fore form more con­nec­tions with one an­other – per­haps in­creas­ing the abil­ity to fo­cus and pay at­ten­tion to de­tails. But this de­gree of in­ten­sity prob­a­bly also leads to a ‘sys­tem over­load’ and the anx­i­ety that autists ex­pe­ri­ence. “Autists see, hear, feel, think and re­mem­ber too much, too deep and process in­for­ma­tion too com­pletely,” said Henry Markram in a re­cent in­ter­view with Wrong

Planet, an on­line autism com­mu­nity.

“You don’t know what it feels like to be me”

Autis­tic in­di­vid­u­als de­velop strate­gies to ac­tively avoid the in­tense pain of per­cep­tual

ex­pe­ri­ence. If that doesn’t work, they re­sort to repet­i­tive move­ments or rad­i­cal be­hav­iour. For ex­am­ple, chil­dren with autism of­ten re­act to new sights, sounds and sen­sa­tions with tem­per tantrums or ex­treme panic. Re­ports from autists who learn to commu

nicate ap­pear to sup­port this the­ory. Dr. Tem­ple Grandin, a fa­mous an­i­mal sci­en­tist and autist, has spo­ken about the in­tense per­cep­tual ex­pe­ri­ence that makes it dif­fi­cult to con­nect with the world out­side her mind. “So­cial­iza­tion is al­most im­pos­si­ble if a per­son gets over­whelmed with noise that hurts their ears, whether this is at work or in a restau­rant. For some, it may sound like be­ing in­side the speaker at a rock con­cert,” she re­marks. Grandin de­vel­oped the abil­ity to com­mu­ni­cate only af­ter years of rig­or­ous prac­tice dur­ing which she learned to ac­tively tune out the in­tense per­cep­tual ex­pe­ri­ences in or­der to fo­cus on com­mu­ni­cat­ing with oth­ers. Carly, who sud­denly com­mu­ni­cated with her dad at the age of 10, ex­presses sim­i­lar dis­com­fort, al­beit of a more dis­turb­ing na­ture. “You don’t know what it feels like to be me, when you can’t sit still be­cause your legs feel like they are on fire, or it feels like a hun­dred ants are crawl­ing up your arms,” she writes. Carly says that peo­ple like her en­gage in repet­i­tive be­hav­iour and throw tantrums be­cause it soothes the in­tense pain felt from sights and sounds. It’s a way of turn­ing the mind in­ward, away from the painful out­side.

Rain Man: the autis­tic ge­nius

A fur­ther ad­van­tage of the ‘ In­tense World The­ory’ is that it can ex­plain why at least 10% of peo­ple with autism also have ‘sa­vant syn­drome’ – in­tel­lec­tual tal­ents that are far be­yond nor­mal. The syn­drome en­tered the pub­lic con­scious­ness af­ter Barry Levin­son’s 1988 movie Rain Man, in which nar­cis­sis­tic yup­pie Char­lie Bab­bitt (played by Tom Cruise) learns that he has an autis­tic, sa­vant brother (played by Dustin Hoff­man). Sa­vant skills usu­ally en­com­pass a nar­row range of abil­i­ties, most typ­i­cally in mu­sic, art, cal­en­dar cal­cu­la­tion, math­e­mat­ics or spa­tial skills. For ex­am­ple, fa­mous sa­vant Daniel Tam­met is able to mul­ti­ply num­bers of up to five dig­its faster than they can be typed into a cal­cu­la­tor. Al­though most cases of sa­vant syn­drome de­velop at a young age, the con­di­tion may be ac­quired in other ways. For ex­am­ple, one sub­ject,

Ja­son Pad­gett, de­vel­oped sa­vant-like artis­tic and math­e­mat­i­cal skills af­ter sus­tain­ing a head in­jury from a bru­tal as­sault. An­other ac­quired sa­vant, Derek Amato, gained the abil­ity to play the pi­ano af­ter a dive into the shal­low end of a swim­ming pool led to a se­vere con­cus­sion. ( You can read about th­ese in­di­vid­u­als in Is­sues

10 and 11 of Guru Mag­a­zine.) In­di­vid­u­als who be­come sa­vants af­ter brain in­jury also tend to ac­quire autis­tic traits. For ex­am­ple, Ja­son be­came ob­sessed with math­e­mat­i­cal for­mu­las, suf­fer­ing from ex­treme anx­i­ety when­ever per­form­ing non-math­e­mat­i­cal tasks, and Derek has a strong urge to play the pi­ano for sev­eral hours at a time each day. If autism is the re­sult of a brain lack­ing in con­nec­tions or pro­cess­ing power, then it is dif­fi­cult to ex­plain why many in­di­vid­u­als af­flicted with the con­di­tion de­velop amaz­ing abil­i­ties and why peo­ple who ac­quire sa­vant syn­drome later in life tend to ac­quire autis­tic traits. Em­pha­sis­ing ‘hy­per­con­nec­tiv­ity’ rather than de­fi­cien­cies in brain pro­cess­ing, the ‘In­tense World The­ory’ goes a long way to ex­plain the ex­treme in­tel­lec­tual abil­i­ties of such autis­tic sa­vants.

What the fu­ture holds

How could the ‘In­tense World The­ory’ in­flu­ence our treat­ment of and care for those with autism? For one thing, it would mean that autism isn’t

thought of as be­ing caused by a deficit. Rather than lack­ing in abil­ity, autists sim­ply have too much to in­ter­pret. The prob­lem with the autis­tic brain is that cer­tain re­gions may de­velop too quickly, go­ing on to dom­i­nate other re­gions – which can make re­ha­bil­i­ta­tion very dif­fi­cult. To coun­ter­act this prob­lem, we might use medicines to sup­press the brain ac­tiv­ity aris­ing from all of the ex­tra con­nec­tions. It seems non­sen­si­cal to treat a lack of com­mu­ni­ca­tion in autism with a drug that lim­its the brain’s ac­tiv­ity, but this coun­ter­in­tu­itive ap­proach works with other dis­or­ders: at­ten­tion deficit hy­per­ac­tiv­ity dis­or­der – a con­di­tion where chil­dren find it hard to con­cen­trate and stay still – is treated with a stim­u­lant, am­phet­a­mine. It is thought that am­phet­a­mine (the same drug as in ‘speed’, al­beit at a very low dose) in­creases the ac­tiv­ity of the con­trol cen­ters of the brain. The re­sult: chil­dren with ADHD calm down and fo­cus. But re­duc­ing ex­cess brain ac­tiv­ity may not be the best way to deal with autism. One in­ter­est­ing pre­dic­tion of the ‘In­tense World The­ory’ is that, like sa­vants, all autists have an abil­ity to per­form dif­fi­cult in­tel­lec­tual tasks with in­cred­i­ble ease – even if they can’t com­mu­ni­cate it. Sa­van­tism is also be­lieved to be the re­sult of a hyperconnected brain. So autists who are not di­ag­nosed with sa­vant syn­drome likely still share many of the ex­cep­tional abil­i­ties of sa­vants. As­sum­ing that peo­ple with autism learn to utilise their brains’ hy­per­re­ac­tiv­ity, they may de­velop ex­cep­tional tal­ents later in life. Ac­cord­ing to Markram, if the autist’s ex­po­sure to her sur­round­ings is con­trolled af­ter birth, “It’s pos­si­ble to be a ge­nius.”

BERIT BRO­GAARD KRIS­TIAN MAR­LOW

BE­LOW: Carly Fleis­chmann.

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