Fay­ola K J Fras­er

Of­ten de­scribed along with oth­er neu­rode­vel­op­men­tal dis­or­ders as a “silent con­di­tion” due to it not al­ways be­ing vi­su­al­ly or im­me­di­ate­ly ap­par­ent, Autism Spec­trum Dis­or­der (wide­ly called autism) af­fects ap­prox­i­mate­ly one in 36 chil­dren glob­al­ly (CDC, 2024) and 15,000-17,000 peo­ple in T&T (Autism So­ci­ety of T&T, 2014).

Al­though autism does not present the same way or to the same de­gree in every per­son with the dis­or­der (hence the use of “spec­trum”), it is of­ten char­ac­terised by ear­ly child­hood de­layed de­vel­op­ment of speech, re­peat­ed pat­terns of be­hav­iour, af­fect­ed so­cial com­mu­ni­ca­tion/in­ter­ac­tion, and high or low sen­so­ry sen­si­tiv­i­ty.

Al­most 15 years ago, Kar­la Gokool and her hus­band (now de­ceased) had their son, Kan­var Gokool, af­ter what she de­scribed as “a rel­a­tive­ly nor­mal, good preg­nan­cy.” For the first year and a half of his life, “he was hit­ting all his bench­marks as he should, and every­thing was go­ing fine.”

Then, on the cusp of age two, they re­alised that he was not start­ing to speak, and the words that chil­dren usu­al­ly be­gin say­ing at that age were not com­ing as ex­pect­ed.

“Around age two, he start­ed say­ing words we didn’t teach him,” she re­mem­bers, “and he would spell ele­phant and he would say the al­pha­bet back­wards.”

Short­ly af­ter, Gokool al­so re­alised that her son was very at­tached to rou­tine, re­call­ing that when he spelt ele­phant, he re­quired his par­ents to re­peat af­ter him. They took Kan­var to a spe­cial­ist, and he was di­ag­nosed with autism at two years old.

“At the point of di­ag­no­sis, I was al­ready do­ing my read­ing and re­search, so when the doc­tor told us he was autis­tic, I al­ready knew what the news was go­ing to be.”

Re­call­ing that her hus­band took more time to process and ac­cept the di­ag­no­sis, Gokool felt pos­i­tive about hav­ing a di­ag­no­sis so they could be­gin ther­a­py. She al­so chose to look at the di­ag­no­sis in a pos­i­tive light.

“I felt blessed that our son did not have any sig­nif­i­cant mo­tor is­sues; he could walk and nav­i­gate for him­self, and now as he’s old­er, he can take care of him­self com­plete­ly, from dress­ing and show­er­ing to us­ing the re­stroom. Hon­est­ly, I was ex­cit­ed; we were giv­en a spe­cial child to take care of, and I was ex­cit­ed to learn more about him.”

She took the lead to en­sure he had ad­e­quate ther­a­py and tried var­i­ous types to see which would res­onate best, in­clud­ing speech ther­a­py, horse­back ther­a­py, and tak­ing him to the autism cen­tre Rahul’s Club­house, an ini­tia­tive led by Autism Sib­lings and Friends Net­work.

Com­ment­ing on her son’s ex­pe­ri­ence with the club­house, she felt that it was a sig­nif­i­cant sup­port to his de­vel­op­ment, as “it’s not one size fits all; their pro­grammes are for­mu­lat­ed to suit each child, and they try to en­hance their abil­i­ty rather than fo­cus on their dis­abil­i­ty.”

She al­so en­rolled her son in Reg­u­lus Ed­u­ca­tion­al Acad­e­my in Ch­agua­nas, a school that caters to chil­dren both with and with­out dis­abil­i­ties. Gokool praised the ed­u­ca­tors at the school who were very well learnt in ed­u­cat­ing chil­dren on the autism spec­trum, which en­hanced her own learn­ing and abil­i­ty to com­mu­ni­cate ef­fec­tive­ly with her son.

She said that the teach­ers “taught me that giv­ing clear in­struc­tions and mak­ing lit­tle adap­ta­tions to the way that we say things as par­ents would be much eas­i­er for him to process.”

Al­most two years ago, Gokool’s hus­band passed away, mak­ing her the sole care­giv­er for her son. Since then, she has ex­pe­ri­enced sig­nif­i­cant chal­lenges in en­sur­ing she pro­vides from a fi­nan­cial per­spec­tive, to par­ent him, to help sup­port his griev­ing process, and to cater to his spe­cif­ic needs.

She has re­turned to her par­ents’ home in San Fer­nan­do, where she re­lies on their un­wa­ver­ing sup­port as well as that of her friends and fam­i­ly to help care for her son.

As a busi­ness own­er with her own cloth­ing busi­ness, she re­ceives a small grant from the Gov­ern­ment. How­ev­er, she still faces the chal­lenge of pay­ing over $7,000 per term for school fees, one-on-one steel­pan lessons, a pri­vate tu­tor for life skills, and speech ther­a­py at $3,000 per term to ad­dress her son’s speech de­lay.

With Kan­var soon to be 15 years old, Gokool has be­gun to con­sid­er his tran­si­tion in­to adult­hood. She has be­gun bring­ing him in­to her cloth­ing busi­ness, teach­ing him how to count mon­ey, use the card ma­chine, and gen­er­al­ly shad­ow her.

“He’s go­ing to be with me for­ev­er,” she mus­es. “He’s my pri­or­i­ty, and I am con­tin­u­ing to think of ways to help him have an in­come and sup­port him as he gets old­er.”

With her un­bri­dled pos­i­tiv­i­ty and spir­it of cheer­ful­ness, Kar­la Gokool makes par­ent­ing a child with autism ap­pear seam­less. How­ev­er, one of her tools is en­sur­ing that she pri­ori­tis­es tak­ing care of her­self. She en­sures that she takes care of her ap­pear­ance, and she leans on her vil­lage, let­ting Kan­var spend nights with her par­ents or her fam­i­ly that he is com­fort­able with so “I can get some nights to just be Kar­la, not Mom­my.”

She en­cour­ages par­ents of autis­tic chil­dren to build strong sup­port sys­tems and take care of them­selves to have the for­ti­tude to pour in­to their chil­dren. She al­so ad­vised oth­er par­ents not to iso­late their chil­dren from so­ci­ety but to live as nor­mal­ly as pos­si­ble while mak­ing nec­es­sary adap­ta­tions to avoid the child be­com­ing ‘stuck’.

Her prac­ti­cal ad­vice is, “If you want to take your child to the movies, take them; maybe don’t go on a busy day. Even if the stim­u­la­tion be­comes too much and you have to leave halfway through, be flex­i­ble.”

Af­ter her son wit­nessed Car­ni­val in 2024 and ex­pressed that he want­ed to play mas this year, Gokool took him, armed with his noise-can­celling head­phones, to Mara­bel­la Kid­dies Car­ni­val where “he played, jumped up and en­joyed him­self.”

Bol­stered by her faith in God, she puts stock in “pray­ing for the strength men­tal­ly to over­come any ob­sta­cles” and fac­ing chal­lenges one is­sue at a time.

As autism is of­ten di­ag­nosed at a young age, fam­i­lies are cru­cial ac­tors in the full lifes­pan of a child who has been di­ag­nosed. A su­per mom and ad­vo­cate for aware­ness, Gokool has learnt many lessons along the jour­ney thus far, as the cor­ner­stone of her fam­i­ly and the cham­pi­on of her son’s de­vel­op­ment.

April is an­nu­al­ly ob­served as Autism Aware­ness Month, an op­por­tu­ni­ty to pro­mote un­der­stand­ing and ac­cep­tance of Autism Spec­trum Dis­or­der.