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Thursday, July 10, 2025

Autistic children playing the waiting game

...par­ents un­der pres­sure, no schools, no ser­vices

by

20140511

Five schools for spe­cial chil­dren were to be built. Prime Min­is­ter Kam­la Per­sad-Bisses­sar said in May 2012 that spe­cial train­ing for teach­ers was al­so nec­es­sary to ad­dress the chil­dren's ed­u­ca­tion­al needs. In 2013 at the 37th gen­er­al as­sem­bly meet­ing of the Unit­ed Na­tions Ed­u­ca­tion­al, Sci­en­tif­ic and Cul­tur­al Or­gan­i­sa­tion (Un­esco), pres­i­dent of the T&T Na­tion­al Com­mis­sion for Un­esco and Ed­u­ca­tion Min­is­ter Dr Tim Gopeesingh then re­quest­ed that the or­gan­i­sa­tion en­gage the UN sys­tem to "pay spe­cif­ic at­ten­tion to chil­dren with spe­cial ed­u­ca­tion needs."

But Dr Rad­i­ca Ma­hase, founder of Sup­port Autism T&T, said much more needs to be ac­tu­al­ly done for autis­tic chil­dren here, de­spite the good work in rais­ing aware­ness.Ma­hase, a his­to­ri­an and se­nior lec­tur­er at the Col­lege of Sci­ence, Tech­nol­o­gy and Ap­plied Arts of T&T (Costaatt), said in a phone in­ter­view with the Sun­day Guardian that not much has trans­lat­ed in­to ac­tu­al pol­i­cy and ser­vices for autis­tic chil­dren.With last month–April–be­ing autism month, Ma­hase said she hopes re­search, pol­i­cy and ser­vices will soon be pro­vid­ed for autis­tic chil­dren in T&T.

From care­giver­to autism ac­tivist

Her pas­sion for get­ting con­crete as­sis­tance for chil­dren with autism came from her de­sire to help her autis­tic nephew, Rahul.She said, "I am a care­giv­er of a child who is on the spec­trum. My nephew Rahul...de­vel­oped as any nor­mal child for the first two years of his life...We on­ly sus­pect­ed that there might be a prob­lem when we found that he was tak­ing too long to talk.

"By the time he was about three and a half, four years old, we knew some­thing was not right. At that point we did not have a la­bel, and we want­ed to know what it was; we need­ed to hear that la­bel..."

She said the fam­i­ly searched for any­one whose child dis­played sim­i­lar de­vel­op­men­tal chal­lenges.For two years, Ma­hase said, the fam­i­ly was un­able to re­ceive an an­swer or name for Rahul's con­di­tion. Be­fore the di­ag­no­sis of Rahul's con­di­tion in May 2012, the fam­i­ly had al­ways been told by schools that there were no fa­cil­i­ties or staff to deal with him–staff were un­trained to deal with spe­cial needs chil­dren.Her de­sire to find help led her to Prithivi­raj Ba­hadurs­ingh, a spe­cial­i­ty com­mu­ni­ty pe­di­a­tri­cian at the South West Re­gion­al Health Au­thor­i­ty (SWRHA). She pro­vid­ed the fam­i­ly with a list of ther­a­pists, spe­cial schools and oth­er re­sources. This en­abled the fam­i­ly, af­ter two un­suc­cess­ful at­tempts, to find a speech ther­a­pist who came to the fam­i­ly's home and worked with Rahul.

She said of the work with the ther­a­pist: "Af­ter three months of ther­a­py, one hour for the week, we got the mir­a­cle we were hop­ing for: she worked with Rahul, got him to set­tle down, and im­por­tant to us–she got him to start go­ing in­to build­ings, any­where."That was a year ago. To­day, Ma­hase said, at nine years old, Rahul is still non-ver­bal, walks on his toes and is not ful­ly pot­ty-trained, but "he wears san­dals now and at­tends Autism Ser­vices (a school) in San Fer­nan­do."

Re­search is vi­tal

Ma­hase iden­ti­fied re­search as a key com­po­nent in tru­ly be­ing able to as­sist autis­tic chil­dren. She said these chil­dren need trained teach­ers and nurs­es. Ser­vices such as speech ther­a­py is not read­i­ly avail­able in the pub­lic health sys­tem for autis­tic chil­dren.Ma­hase said she hoped that the promis­es made by the Gov­ern­ment would soon be­come a re­al­i­ty. She said she hoped that ser­vices for autis­tic chil­dren would be­gin from ear­ly child­hood. Many par­ents of autis­tic chil­dren, she said, can­not meet the costs of car­ing for an autis­tic child.Meghan Lee-Wa­ter­man, an autism ed­u­ca­tion spe­cial­ist who holds a Mas­ters in Spe­cial Ed­u­ca­tion with a fo­cus on autism, in a phone in­ter­view with the Sun­day Guardian last week, said gen­er­al aware­ness of the is­sue has been grow­ing.Lee-Wa­ter­man al­so said fa­cil­i­ties in the pub­lic sphere need­ed to be put in place. Many speech ther­a­pists, she said, were on­ly avail­able pri­vate­ly and pub­lic grants were on­ly giv­en for up to $800. While she ac­knowl­edged the Gov­ern­ment's promise to con­struct schools for spe­cial needs chil­dren, there is a need for more schools, she said.


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