WO­MAN WALKS AROUND THE COUN­TRY IN AUTISM AWARE­NESS CAM­PAIGN

Since last month, Abi­gail Brooke has walked and talked about autism in Embu, Laikipia, Meru and Ny­eri coun­ties, and now aims to tra­verse Africa

The Star (Kenya) - - Big Read /Living With Disability - WAMBUGU KANYI @joe­wambugu2003

SOME­TIMES she spends sev­eral days in the bush, on her own, walk­ing her way. Then she reach towns and min­gles with peo­ple. Abi­gail Brooke, 33, alias Abby, walks with camels car­ry­ing her lug­gage along the way.

“I started this walk two months ago. On my jour­neys, I em­pha­sise the im­por­tance of ed­u­ca­tion, cre­ate sup­port and open a way for peo­ple to un­der­stand and work with autism. I plan to walk across Africa to help cre­ate autism aware­ness and ac­cep­tance,” she says.

Abby was di­ag­nosed with Asperger’s Syn­drome while 13 in Eng­land, where she had gone for ed­u­ca­tion, although born in Nairobi.

“Be­cause of both my­self and every­one around me not re­ally un­der­stand­ing any­thing about it, I told no one and had no one to talk to, or with. I’d de­scribe my­self as a free-think­ing gypsy no­mad (if that’s even a thing). I love be­ing in na­ture, trav­el­ling, read­ing, art, pho­tog­ra­phy, mu­sic, meet­ing peo­ple, learn­ing about cul­tures and so much more. I take a keen in­ter­est in how the world works,” she says.

She says she spent a large chunk of her life not re­ally know­ing any­thing about who she was.

“Bul­lied, dis­crim­i­nated and teased al­most con­stantly through­out (and even af­ter) my school years, I lost a lot of self-con­fi­dence and de­vel­oped se­ri­ous de­pres­sion,” she says.

In 2011, she reached out to the wider autis­tic world on so­cial me­dia. Con­nect­ing with other peo­ple who ‘get her’ was life-chang­ing in the best way, not­ing that her whole world changed; she was fi­nally able to find her own place in the world.

“Over the last few years, I’ve been gain­ing an un­der­stand­ing of both my­self and autism. I reached out to the wider autism and dis­abil­ity com­mu­nity in Kenya. Speaking with oth­ers, vol­un­teer­ing in the field, and do­ing my own re­search pro­vided me a deeper un­der­stand­ing on the is­sues sur­round­ing dis­abil­i­ties in Africa,” Abby says.

WALK­ING AUTISM

Abby is not a stranger to a global per­spec­tive. She has made a few trips overseas, took a year back­pack­ing around Aus­tralia, and spent a year study­ing in South Africa.

“But Kenya has been my home and heart from birth. A coun­try with a low level of aware­ness about autism, its is­sues and ac­cep­tance for peo­ple af­fected by it,” she adds.

Her walks fo­cuses on im­pov­er­ished ar­eas, where knowl­edge, ed­u­ca­tion and sup­port are lack­ing, and joined by spe­cial­ists, she give talks at schools, clin­ics, faith-based groups, com­mu­ni­ties and the gen­eral pub­lic.

They help to de-stig­ma­tise autism and dis­abil­i­ties in Africa, fight dis­crim­i­na­tion of peo­ple and en­cour­age com­mu­ni­ties to work to­gether.

Since last month, Abby has walked and talked in Embu, Laikipia, Meru and Ny­eri coun­ties, and now aims to walk around Africa.

WHAT IS AUTISM?

Autism Spec­trum Disor­der is a life­long de­vel­op­men­tal con­di­tion that typ­i­cally ap­pears dur­ing the first three years of life. It af­fects 3 ma­jor ar­eas in life: com­mu­ni­ca­tion, so­cial skills and be­hav­iour.

The term spec­trum stands for the broad va­ri­ety of symp­toms and in­ten­sity lev­els char­ac­ter­is­tic of per­sons af­fected by autism. It is gen­er­ally ac­cepted that ASD is caused by ab­nor­mal­i­ties in brain struc­ture or func­tion. With­out know­ing one sin­gle and pre­cise cause, re­search is ex­plor­ing dif­fer­ent as­sump­tions, such as hered­ity, ge­net­ics and med­i­cal is­sues.

Sta­tis­tics show that one in ev­ery 68 chil­dren is af­fected by autism, with boys five times more of­ten af­fected than girls. It is con­sid­ered that ASD is the fastest-grow­ing de­vel­op­men­tal dis­abil­ity of the past few decades.

AUTISM IN AFRICA

Autism is still a rel­a­tively un­known and un-dis­cussed is­sue in Africa, due to lack of aware­ness, ed­u­ca­tion and sup­port. Ex­ist­ing cen­tres and schools in parts of Africa work­ing with autism are very few and of­ten too ex­pen­sive for most peo­ple.

Im­pov­er­ished, ru­ral and re­mote ar­eas are par­tic­u­larly af­fected by th­ese de­fi­cien­cies of knowl­edge and ac­cess to care. Due to the stigma and dis­crim­i­na­tion many peo­ple project on per­sons with dis­abil­i­ties in Africa, in­di­vid­u­als with autism are not given much in terms of ac­cep­tance.

Chil­dren and adults who dis­play the typ­i­cal signs of autism are of­ten de­nied ed­u­ca­tion, vic­timised, and in ex­treme cases even mur­dered.

AWARE­NESS AND AC­TION

In­creased aware­ness, early di­ag­no­sis and in­ter­ven­tion, and ac­cess to ap­pro­pri­ate ser­vices and sup­port lead to sig­nif­i­cantly im­proved out­comes. Early in­ter­ven­tion from the ages of two to three years has proven to be very im­por­tant in en­abling chil­dren with autism to live a sat­is­fy­ing and in­de­pen­dent life.

‘BUL­LIED, DIS­CRIM­I­NATED AND TEASED AL­MOST CON­STANTLY THROUGH­OUT (AND EVEN AF­TER) MY SCHOOL YEARS, I LOST A LOT OF SELFCONFIDENCE AND DE­VEL­OPED SE­RI­OUS DE­PRES­SION’

They mainly in­clude ac­tiv­i­ties to in­crease com­mu­ni­ca­tion, so­cial­i­sa­tion, ac­tiv­i­ties of daily liv­ing and play, as well as to mod­ify be­hav­iour and fa­cil­i­tate sen­sory in­te­gra­tion.

The needs of per­sons af­fected by autism evolve with their age, and spe­cific con­di­tions and care can be pro­posed for the dif­fer­ent phases of life.

As adults, many per­sons af­fected by autism are able to take part in a ful­fill­ing life, both pro­fes­sional and pri­vate, with some of them evolv­ing in a highly qual­i­fied pro­fes­sional en­vi­ron­ment. They of­ten need a well-struc­tured em­bed­ding adapted to their needs.

Some well-known in­di­vid­u­als on the spec­trum in­clude Isaac New­ton, Al­bert Ein­stein and the bi­ol­o­gist Tem­ple Grandin.

Ac­cord­ing to a new study by re­searchers at Wash­ing­ton State Univer­sity Van­cou­ver, based on a sur­vey of 326 fam­i­lies, slightly more than half the women polled worked fewer hours to ac­com­mo­date the needs of their child, and three out of five had not taken a job be­cause of their child’s autism.

To care for the child, one-quar­ter had taken a leave of ab­sence and nearly as many had not taken a pro­mo­tion. Nearly 60 per cent had suf­fered fi­nan­cial prob­lems in the past year.

Th­ese are some of the ex­pe­ri­ences that led some par­ents to raise aware­ness in Kenya on the sub­ject and to en­cour­age the many par­ents who had lost hope that the sit­u­a­tion could not be man­aged.

RE­HA­BIL­I­TA­TION

She says pub­lic aware­ness will help par­ents stop spend­ing huge bills on hospi­tals in the hope that the disor­der will be cured, and in­stead fo­cus more on man­ag­ing and re­ha­bil­i­tat­ing peo­ple with autism.

Eva Ny­oike, 50, a spe­cial needs con­sul­tant, runs a pro­gramme called Acorn Spe­cial Tu­to­ri­als which deals with chil­dren with cere­bral palsy, Down’s syn­drome and autism. “Trauma, whether phys­i­o­log­i­cal or psy­cho­log­i­cal (emo­tional), could trig­ger autism. Though there is a pat­tern, no­body knows yet what causes autism,” she says.

Autism or autis­tic disor­der is a life­long men­tal dis­abil­ity that af­fects how a per­son com­mu­ni­cates and re­lates to other peo­ple, and how they ex­pe­ri­ence the world around them.

Ac­cord­ing to Dr Amina Abubakar, a psy­chol­o­gist at Kemri, autism is a men­tal dis­abil­ity that man­i­fests in chil­dren un­der the age of three years, and doc­tors are yet to find out what re­ally causes the con­di­tion.

“It is a dis­abil­ity that is not eas­ily iden­ti­fied. This makes it hard for peo­ple to know more about it,” Amina says.

“Autism is char­ac­terised by many things. Most of the chil­dren suf­fer­ing from it can­not main­tain eye con­tact when they are greeted and they find it dif­fi­cult to play with oth­ers.”

SPE­CIAL ED­U­CA­TION PRO­FES­SION­ALS

Spe­cial Ed­u­ca­tion Pro­fes­sion­als is a multi-dis­ci­plinary team of spe­cial ed­u­ca­tion pro­fes­sion­als work­ing with chil­dren with dis­abil­i­ties, and op­er­at­ing within the frame­work of ed­u­ca­tion, re­ha­bil­i­ta­tion and health­care in Kenya.

It re­cruits its mem­bers from spe­cial needs teach­ers, speech and lan­guage ther­a­pists, oc­cu­pa­tional ther­a­pists, phys­io­ther­a­pists and psy­chol­o­gists.

SEP pro­poses early con­sul­ta­tions, train­ings, ad­vice, and sup­port and ac­tiv­i­ties for chil­dren with dis­abil­i­ties.

AUTISM AWARE­NESS KENYA

Autism Aware­ness Kenya is a reg­is­tered so­ci­ety made up of par­ents, pro­fes­sion­als and vol­un­teers who aim to raise aware­ness about autism in Kenya. It aims to re­duce stigma, in­crease ser­vices and change at­ti­tudes in or­der to give peo­ple with autism a chance to reach their full po­ten­tial.

MANY PER­SONS AF­FECTED BY AUTISM ARE ABLE TO TAKE PART IN A FUL­FILL­ING LIFE, IF WELL SUP­PORTED. FA­MOUS EX­AM­PLES IN­CLUDE ISAAC NEW­TON, AL­BERT EIN­STEIN AND TEM­PLE GRANDIN.

/ WAMBUGU KANYI

Abby Brooke, 33 who has started aware­ness cam­paigns on autism in Africa.

/ WAMBUGU KANYI

Abby Brooke (in front) par­tic­i­pat­ing in an autism aware­ness walk in Laikipia county.

/ WAMBUGU KANYI

Ny­eri res­i­dents dur­ing an autism aware­ness meet­ing in Ny­eri.

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