As­chille Clarke-Mendes

Autism is a com­plex neu­ro­log­i­cal dis­or­der, and not a hand­i­cap. This is the first of many mis­con­cep­tions that must be de­bunked in or­der to ful­ly un­der­stand, ap­pre­ci­ate, and cater for those af­fect­ed by autism.

The Autis­tic So­ci­ety of T&T (ASTT) is a par­ent sup­port group for those who take care of autis­tic chil­dren. They have been around for 25 years, but so have re­ceived no fund­ing from the gov­ern­ment. They cur­rent­ly have 650 fam­i­lies reg­is­tered in T&T, but that is most like­ly few­er than the ac­tu­al num­ber, as the Unit­ed Na­tions has said that one in every 68 peo­ple has an autism spec­trum dis­or­der–one per cent of the glob­al pop­u­la­tion.

The ASTT spoke with the T&T Guardian about the prob­lems faced lo­cal­ly con­cern­ing ad­vo­ca­cy for the men­tal con­di­tion, as well as pos­si­ble so­lu­tions for these prob­lems. The T&T Guardian al­so got the chance to speak with some of those af­fect­ed by the con­di­tion.

Glen­don Cre­pin is a mid­dle-aged man di­ag­nosed with Lev­el One Autism. He al­so hap­pens to be the res­i­dent "origa­mi ex­pert" for Autis­tic Place. He en­joys watch­ing mu­sic videos and read­ing com­ic books as well as nov­els. He at­tend­ed culi­nary class­es at the Youth Train­ing and Em­ploy­ment Part­ner­ship Pro­gramme, and us­es his knowl­edge to cook pas­ta. When things get too crowd­ed or noisy, he feels un­com­fort­able, and leaves the room to watch mu­sic videos by him­self on his tablet. When he was younger, peo­ple used to make fun of him for the way he speaks. He found it hard to com­mu­ni­cate, but he has since found so­lace in the walls of Autism Place, where he can get the sup­port he needs, and where he can cre­ate origa­mi.

At Christ­mas, he sells cards dec­o­rat­ed with his hand­i­work: the ying-yang sign jump­ing off the card­board; the icon­ic ba­by in a manger; and a sun sink­ing slow­ly be­hind moun­tains (his favourite). His is one of many adorn­ing the walls of Pow­er­Gen on Wright­son Road. He feels at home at the Autism Place, where he sits for hours dai­ly teach­ing origa­mi class­es to the youths at the cen­tre.

Kendell Bod­doo is 18. He now at­tends high school and has a group of friends. But his sto­ry was a long and atyp­i­cal one. He didn't start speak­ing un­til he was al­most six, and he at­tend­ed sev­er­al spe­cial schools un­til he start­ed pri­ma­ry school at the age of nine. Even then, when he be­gan in sec­ond year, he was not very ver­bal. He would an­swer your ques­tions, but wouldn't give you much more than that. Mak­ing friends was a chal­lenge for him. Some kids want to make friends with him, but they did not know how.

When at­tend­ing autism camp, he used to take pic­tures, play video games, and make car­toons. He showed the T&T Guardian one of his cre­ations, Son­ic Gets Bust­ed, an an­i­ma­tion fea­tur­ing Son­ic the Hedge­hog along with his own char­ac­ter, spe­cial agent KBMW (Kendell Boodoo Moon Walk­er). Car­toons and draw­ings act as his means for es­cape, as well as his way to com­mu­ni­cate his thoughts and feel­ings. Amoy Boodoo, Kendell's moth­er, ex­plained that when an in­ci­dent hap­pens at school, and he gets ques­tioned, it's best that he an­swers through an­i­ma­tion, "he may leave out some in­for­ma­tion be­cause he is an­gry. He can't de­fend him­self when he can't speak prop­er­ly. But the car­toon shows what ex­act­ly took place." Amoy gave an ac­count of the bul­ly­ing he has had to suf­fer, re­call­ing that one day he re­ceived an E in an ex­am, and thought it stood for 'ex­cel­lent.' The kids in his class teased him in­ces­sant­ly. "He want­ed to erase the let­ter E from the al­pha­bet," said Amoy, "This went on for years, and he had to get coun­selling."

Autis­tic chil­dren, like Kendell, tend to take things lit­er­al­ly, and have dif­fi­cul­ty un­der­stand­ing what might seem to be ob­vi­ous ques­tions.

"He was asked, as part of an ex­er­cise, to write ex­am­ples of his needs and wants," said Amoy. "He wrote that he need­ed a key to his house, be­cause his own was lost. He want­ed the bul­lies in his school to get de­ten­tion. The teacher didn't un­der­stand him, writ­ing ques­tion marks next to his re­spons­es. The teacher was ex­pect­ing 'needs' to be com­modi­ties like food and wa­ter, but those aren't needs for him, be­cause he al­ready has those things."

A sit­u­a­tion like that could have been solved by the teacher pulling him aside and ask­ing him about what those things meant. De­spite that, he is now un­der­stand­ing that some words have mul­ti­ple mean­ings and now he has a list of Trinida­di­an slangs that he up­dates reg­u­lar­ly.

In Trinidad, Cre­pin's and Boodoo's cas­es are ex­cep­tions rather than the norm, as the T&T Guardian un­earthed some har­row­ing tales of oth­er autis­tic peo­ple, mis­un­der­stood and left in the dark. Some are sent to St Ann's Hos­pi­tal, be­cause their par­ents are not in­formed about the con­di­tion, and many autis­tic peo­ple are wrong­ly dis­missed as men­tal­ly ill.

"Our chil­dren with autism are not be­ing catered for in the school sys­tem," pres­i­dent of the ASTT, Teresina Sie­u­nar­ine lament­ed.

"The ma­jor prob­lem is so­cial­is­ing, and school is a very so­cial place," said Sie­u­nar­ine.

"There is a lot of bul­ly­ing and dis­re­spect in the school­ing sys­tem. What is im­por­tant is teach­ing how to com­mu­ni­cate their is­sues," said Sie­u­nar­ine.

"This would de­crease the mis­un­der­stand­ing, which would re­sult in few­er tantrums and few­er frus­tra­tions among those af­fect­ed."

Nichol Alves, gen­er­al man­ag­er of ASTT, said that de­spite ef­forts made by the Unit­ed Na­tions, there is still a lot left to do in the area of ad­vo­ca­cy for per­sons with autism in T&T. This is so in spite of the sup­port they have been get­ting from key part­ners.

Alves said that ad­vo­ca­cy for autismim­proved in T&T when Re­pub­lic Bank joined Autis­tic So­ci­ety's par­ent sup­port group to mark April as a month de­vot­ed to autism aware­ness.

She said this year Reema Car­mona, wife of Pres­i­dent An­tho­ny Car­mona, and So­cial De­vel­op­ment min­is­ter Chris­tine Newal­lo-Ho­sein al­so them for the autism aware­ness walk around the Queen's Park Sa­van­nah.

"ASTT is very thank­ful to our many donors and spon­sors. ASTT is able to func­tion be­cause of as­sis­tance from Re­pub­lic Bank's Pow­er to Make a Dif­fer­ence Pro­gramme; many in­di­vid­u­als; char­i­ta­ble groups; fund rais­ing events; vol­un­teers, and so on," said Alves.

Alves sug­gest­ed that ad­vo­ca­cy can be im­proved as "par­ents be­come more em­pow­ered and do not feel that they will be vic­timised for speak­ing out and ex­pect­ing the best for their child/adult with autism."

She feels the gov­ern­ment can take steps as well. "It will al­so be im­proved if there is the po­lit­i­cal will to spend mon­ey on aware­ness cam­paigns; im­ple­ment the var­i­ous poli­cies on dis­abil­i­ty is­sues: the UN Con­ven­tion on the Rights of Peo­ple with Dis­abil­i­ties, and the UN Rights of the Child," said Alves.

The ASTT gen­er­al man­ag­er be­lieves there a clear fo­cus on im­prov­ing the lives of peo­ple with spe­cial ed­u­ca­tion needs and that means prop­er plan­ning, not an ad hoc ap­proach. This ac­cord­ing to Alves, must in­volve a "com­mu­ni­ty-based ap­proach" that al­lows for ear­ly ex­pert di­ag­no­sis, ear­ly af­ford­able and ap­pro­pri­ate ther­a­pies, ed­u­ca­tion­al ser­vices-ear­ly child­hood, pri­ma­ry, sec­ondary, ter­tiary lev­el, vo­ca­tion­al; en­tre­pre­neur­ial op­por­tu­ni­ties and em­ploy­ment; and ac­cess to job coach­es in the work­place and autism friend­ly places for recre­ation­al ac­tiv­i­ties and wor­ship.

In the area of ed­u­ca­tion, Alves said that for chil­dren with autism, there is no "one size fits all" as each per­son has dif­fer­ent needs and al­so dif­fer­ent strengths.

"Many strate­gies de­vel­oped for chil­dren with autism can al­so be used in a reg­u­lar class­room. One such method is the five point scale."

But to im­ple­ment these strate­gies, ed­u­ca­tors will have dif­fi­cul­ties, par­tic­u­lar­ly in over­com­ing a stig­ma which af­fects the trans­for­ma­tion of at­ti­tudes and un­der­stand­ing of autism.

"The aware­ness and ed­u­ca­tion must start with small chil­dren, at ear­ly child­hood lev­el, and in the home. Autism is a spec­trum dis­or­der and is of­ten mis­di­ag­nosed. It is not a men­tal ill­ness but a neu­ro­log­i­cal con­di­tion," Alves said.

"There are dif­fer­ences in the brain struc­ture which af­fect the way they per­ceive the world and peo­ple in the world. It is im­por­tant to teach peo­ple with autism us­ing spe­cif­ic strate­gies and ther­a­pies so that the brain can form new con­nec­tions and help the in­di­vid­ual cope with liv­ing in this world."

"When ed­u­ca­tors are giv­en the nec­es­sary tools for teach­ing chil­dren with autism then they will be more com­fort­able ac­cept­ing chil­dren with autism and oth­er dis­abil­i­ties in­to the reg­u­lar class­room," said Alves.

She al­so sug­gest­ed that the gov­ern­ment pro­vide schol­ar­ships for peo­ple to study those men­tal con­di­tions to have a wider pool of be­hav­iour­al ther­a­pists and oc­cu­pa­tion­al ther­a­pists.

With ear­ly di­ag­no­sis and in­ter­ven­tion, the autis­tic child can see dras­tic im­prove­ments in their life as the mind's ner­vous sys­tem has in­cred­i­ble plas­tic­i­ty, and can be mould­ed to com­pen­sate for the con­di­tion.