SE­CRETS OFTHE AUTIS­TIC MIND

Autism is ris­ing alarm­ingly in In­dia. How far is the new sci­ence from find­ing a cure? New re­search busts old myths and brings new hope.

India Today - - HEALTH - By Da­mayanti Datta

Su­mantra Chat­tarji is fry­ing a bit of brain. Or so it seems. The neu­ro­bi­ol­o­gist at Ban­ga­lore’s Na­tional Coun­cil of Bi­o­log­i­cal Sciences ( NCBS) is pass­ing cur­rent through a slice of brain kept alive ar­ti­fi­cially. One can hear the hiss and siz­zle. But he is try­ing to lis­ten in on a dif­fer­ent ‘sound’: The elec­tri­cal lan­guage of two brain cells ‘talk­ing’ across an in­finites­i­mally tiny gap, 25 bil­lionths of a me­tre. As he steps up volt­age, a jum­ble of spikes and dips drift across the screen. “The cells are talk­ing too much,” he says. “A typ­i­cal autis­tic brain.”

For years, In­dia did not find the num­ber or ex­tent of the dis­or­der. Doc­tors rou­tinely called it a Western syn­drome, doubt­ing its preva­lence here. “It’s one of the most mis­di­ag­nosed dis­or­ders,” says Dr Vibha Kr­ish­na­murthy, founder of Mum­bai-based Um­meed, a non-profit re­source for autis­tic chil­dren. Di­ag­no­sis gets de­layed as doc­tors treat it as men­tal re­tar­da­tion or schizophre­nia or blame bad par­ent­ing. Shat­ter­ing the myths is a sur­vey that puts num­bers in place for the first time in In­dia.

For long, the ques­tion was: What causes autism? Now the ques­tion is: Can it be re­versed? The hunt is now on for autism in genes and mol­e­cules, as sci­en­tists de­code the way brain cells ‘talk’ to each other. It has al­ready been shown on an­i­mal mod­els in labs that some types of autism can be re­versed by slow­ing down brain ac­tiv­ity. In­dia has for­ayed into this ex­alted global arena of cut­ting-edge sci­ence. The new num­bers and new sci­ence bring new hope. Here are some of the myths they blow apart.

MYTH Autism is not com­mon yet in In­dia

RE­AL­ITY Highly preva­lent and ris­ing

MORE THAN 10 MIL­LION chil­dren in In­dia suf­fer from autism, shows the first-ever sur­vey. “We found about 1 to 1.5 per cent autis­tic chil­dren be­tween ages two and nine in In­dia,” says Dr N.K. Arora, ex­ec­u­tive di­rec­tor of the In­ter­na­tional Clin­i­cal Epi­demi­ol­ogy Net­work Trust ( INCLEN), which led the study. That means a preva­lence rate of one in 66. In the ab­sence

of na­tional stud­ies, the es­ti­mated rate for autism in In­dia so far varied be­tween an im­pres­sion­is­tic 1 in 500 and 1 in 150. The sur­vey was con­ducted on 4,000 house­holds in Andhra Pradesh, Odisha, Hi­machal Pradesh, Haryana and Goa in col­lab­o­ra­tion with

AIIMS, Thiruvananthapuram Med­i­cal Col­lege and uni­ver­si­ties of Stan­ford and Penn­syl­va­nia, US.

“Autism war­rants im­me­di­ate at­ten­tion,” says Dr Arora, a pae­di­a­tri­cian who has worked in AIIMS. INCLEN has also de­vel­oped an in­stru­ment to di­ag­nose the sever­ity of autism in the In­dian con­text. Cur­rently, the Autism Di­ag­nos­tic Ob­ser­va­tion Sched­ule, de­signed in the West, is be­ing used in In­dia. “The num­bers are alarm­ing and calls for pol­icy-mak­ing and in­ter­ven­tions to bring th­ese chil­dren into main­stream so­ci­ety,” says Dr Arora. MYTH No one knows what causes it

RE­AL­ITY The prob­lem lies in the way brain cells con­nect “RE­MEM­BER THE FA­MOUS Lon­don tube warn­ing, ‘Mind the Gap’? The mind has many gaps. The ul­ti­mate chal­lenge is to find out what ex­actly hap­pens here,” says Chat­tarji. The elec­tro­phys­i­ol­ogy lab at NCBS de­mands si­lence: No watches, no mo­biles, no move­ments. The lab is chock-a-block with wires, pipes, test tubes, a dig­i­tal screen blink­ing here, a mi­cro­scope zoom­ing there. Re­searchers prod brain slices to record elec­tri­cal ac­tiv­ity. That data will al­low Chat­tarji to trace the ar­chi­tec­ture of autis­tic brains. As the com­puter screens show, bil­lions of neu­rons ‘talk’ to each other across tril­lions of gaps (called synapses)— at one-tenths of the time it takes to blink an eye. That com­mu­ni­ca­tion determines a per­son’s men­tal traits: Why we write poetry or solve com­plex math. “In autism, the wiring goes wrong,” says Chat­tarji.

On a typ­i­cal day, Delhi twins, six-year-olds Nikki and Kush, don’t dis­turb any­one. They sing “Chug­gachugga, chug, chug” as they play with Thomas the train over and over again. It’s only when they are forced to min­gle with strangers that they go “wild”: They turn well-ap­pointed draw­ing rooms up­side down, strip cush­ions off so­fas, line up books and pens in rows and aim spit­tle if any­one tries to talk to them. Peo­ple call them the “ter­ri­ble twins” and hes­i­tate to in­vite the fam­ily home. But no one knows that the boys are driven to dis­trac­tion by con­stant and deaf­en­ing chat­ter in­side their brain.

The new sci­ence shows that brain cells can turn into ‘chatterboxes’ in autism: There is more elec­tri­cal en­ergy, more chem­i­cals, more hor­mones in the tiny gaps be­tween brain cells than nor­mal, which con­fuses the cir­cuitry. In some forms of autism the brain be­comes a chat­ter­box, while in other cases it goes the op­po­site way. In both, it be­comes harder for the brain to iden­tify and at­tend to sig­nals, ex­plains Chat­tarji. That ex­plains why autism is such a psychedelic spec­trum of ex­tra­or­di­nary abil­i­ties and dis­abil­i­ties: Some can’t speak in whole sen­tences while oth­ers can play long com­po­si­tions on the pi­ano with­out tak­ing lessons ever, can’t tell right from left but can fig­ure out cube roots quicker than a cal­cu­la­tor. “The brain de­vel­ops fine but it de­vel­ops dif­fer­ently,” says Chat­tarji.

Tito Ra­jarshi Mukhopad­hyay, an autis­tic 22-year-old who now lives in the US, writes about the “sen­sory bat­tle” in his brain in his 2011 book,

How Can I Talk If My Lips Don’t

Move? In­side My Autis­tic Mind. It’s a com­bat zone where one sense is ex­pe­ri­enced as another (vi­sion as colour or voice as smell), un­con­scious scream­ing takes over, anx­i­ety at­tacks are trig­gered by ran­dom voices or fa­cial ex­pres­sions, one’s im­age on the mir­ror means more than toys. Essen­tially non-ver­bal, he started writ­ing by age eight. And that’s how he com­mu­ni­cates even now.

MYTH Ther­apy can’t ‘re­wire’ the autis­tic brain

RE­AL­ITY Ther­apy can open new neu­ral path­ways of learn­ing THE LEAD­ING CAUSE of autism is now be­ing con­sid­ered ge­netic: Frag­ile X Syn­drome ( FXS). At the root of it is a sin­gle gene, Fmr1, which cre­ates a pro­tein cru­cial for brain cells to ‘talk’ to each other. While ev­ery­one has Fmr1 on sex chro­mo­some X, for some, the gene un­der­goes ab­nor­mal changes, ap­pear­ing as bro­ken, pinched-in or ‘frag­ile’ un­der a mi­cro­scope. The Frag­ile X ac­tion means a cir­cuit will not work. Be­cause of this mu­ta­tion, an autis­tic brain is dif­fer­ent from birth. Frag­ile X chro­mo­some of­ten passes from one gen­er­a­tion to the next with no signs or symp­toms. But when it strikes, it af­fects males more: One in 4,000 boys to one in 6,000 girls. Up to 20 per cent of boys with autism have

the con­di­tion due to Frag­ile X. One way to solve the prob­lems of FXS and autism is to help the brain cre­ate new neu­ral path­ways that shut out ‘ex­tra noise’, ex­plains Kr­ish­na­murthy of Um­meed. Eight-year-old Mum­bai boy Jiyon’s brain is learn­ing to do just that. The trig­ger is his best friend, a year-old trained labrador, Simba. Like many autis­tic chil­dren, Jiyon used to speak only a word or two, in­stead of a sen­tence. But now, thanks to Simba, he has learnt to speak in com­plete sen­tences. When Jiyon wants to play and says “ball”, Simba has been trained not to budge. So Jiyon has to say, “Let’s play ball”. The new learn­ing has opened up new chan­nels of com­mu­ni­ca­tion—tack­ling the big­gest prob­lem in autism.

Ear­lier this year, Jiyon was al­lowed to travel with his mother Parama Bhattacharya and Simba on a flight from Kolkata to Mum­bai, a first for peo­ple with autism in In­dia. Jiyon is a per­fect ex­am­ple of how sci­en­tific break­throughs are chang­ing the world of the autis­tic, one step at a time. “It helps if fam­i­lies un­der­stand the bi­o­log­i­cal na­ture of the disease,” says Kr­ish­na­murthy. Twelve years ago, when she started Um­meed, barely a cou­ple of chil­dren came to her in a month. Now there are five to six new cases ev­ery week. “The milder end of the spec­trum is work­ing very well with ther­a­pies, sup­port­ive fam­i­lies and schools,” she says.

MYTH Autism is not ge­netic

RE­AL­ITY There is clearly a ge­netic an­gle to autism

FIVE-YEAR-OLD Atharva was di­ag­nosed with FXS about six months ago. Even as an in­fant, his par­ents, Gauri and Sekhar Mude, no­ticed low mus­cle tone in his legs, body and neck. He had prob­lems crawl­ing, point­ing at and grasp­ing things. “His ears were slightly pro­trud­ing,” re­calls his fa­ther. “We fondly called him Gana­p­ati Bappa for that, lit­tle know­ing it’s a sign of FXS.” Last year, a blood test con­firmed it. With a range of ther­a­pies, he has al­ready started do­ing what he could not ear­lier: He can point a fin­ger at things he wants, hold a pen, and can use the toi­let.

Shalini Ke­dia, who set up re­source cen­tre Frag­ile X So­ci­ety of In­dia, in Mum­bai in 2002, points out that ages one to two is prime time to start autism treat­ments. “As 80-90 per cent of the brain grows in the first two-and-hal­fyears of life, in­ter­ven­tions work bet­ter then,” she says. Par­ents have started bring­ing chil­dren who are not yet three. “Autism is not usu­ally di­ag­nosed un­til around 18 months, when the per­sis­tence of a wor­ri­some be­hav­iour be­comes clearer,” she says. But there are tell­tale clues: Lack of words or com­mu­nica­tive ges­tures. “The ear­lier de­lays are iden­ti­fied, the sooner you can help your child,” she says.

MYTH Autism can­not be re­versed

RE­AL­ITY Has been re­versed on an­i­mals in labs

RE­VERS­ING AUTISM is one of medicine’s tough­est chal­lenges. The only drugs avail­able for the syn­drome treat overt symp­toms such as anx­i­ety and ag­gres­sion. But a rad­i­cal cure— in­hibit­ing a re­cep­tor to slow brain ac­tiv­ity to nor­mal lev­els—from MIT neu­ro­sci­en­tist Mark Bear has en­tered the Phase II ( hu­man) tri­als. If it works as well as it did in mice, it could be a first step to treat­ing other causes of autism. NCBS has also won global at­ten­tion for its col­lab­o­ra­tive re­search on FXS and autism. In 2010, Chat­tarji and his team at NCBS mapped the cel­lu­lar ba­sis of emo­tional prob­lems as­so­ci­ated with FXS: Chronic fear, stress and anx­i­ety. And the symp­toms, even long-term rav­ages, have been re­versed with med­i­ca­tion on lab­o­ra­tory mice.

What’s the next big idea? The buzz is grow­ing. Ge­neti­cists, molec­u­lar bi­ol­o­gists and bio­chemists are com­ing to­gether to un­der­stand how brain cells talk; elec­tri­cal phys­i­ol­o­gists to iden­tify the lan­guage of that com­mu­ni­ca­tion; neu­ro­sci­en­tists to work out struc­tural changes; be­havioural neu­ro­sci­en­tists and psy­chi­a­trists to map be­hav­iour changes; com­puter sci­en­tists to in­ter­pret bi­o­log­i­cal sta­tis­tics: and stem cells ex­perts to re-engi­neer cells.

With In­dia dis­cov­er­ing more chil­dren with autism, will cut­ting-edge sci­ence and parental pas­sion fi­nally force pol­icy-mak­ers to ad­vance the cause of this lit­tle-un­der­stood and largely-mis­man­aged re­al­ity?

Source: Study by In­ter­na­tional Clin­i­cal Epi­demi­ol­ogy Net­work Trust (INCLEN), in col­lab­o­ra­tion with the AIIMS, Thiruvananthapuram Med­i­cal Col­lege, Stan­ford

VIKRAM SHARMA/ www.in­di­a­to­day­im­ages.com

and Penn­syl­va­nia uni­ver­si­ties, on 4,000 house­holds across In­dia, 2013

Born with Frag­ile X Delhi boy Divyam Me­hta, 5, at play. Di­ag­nosed with Frag­ile X Syn­drome, the lead­ing cause of autism, in his genes.

His Mas­ter’s Voice Mum­bai boy Jiyon, 8, has learnt to speak full sen­tences with the help of his best friend Simba the labrador

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