Stand­ing at six feet, two inch­es tall, 14-year-old De­vane Lee­hue doesn’t al­ways act his age. He was di­ag­nosed with op­po­si­tion­al de­fi­ant dis­or­der (ODD), a child­hood dis­or­der on the autism spec­trum that is de­fined by a pat­tern of hos­tile, dis­obe­di­ent and de­fi­ant be­hav­iours di­rect­ed at adults or oth­er au­thor­i­ty fig­ures.

The dis­or­der al­so al­ters De­vane’s lev­el of think­ing. Ac­cord­ing to his moth­er Leslieann, doc­tors told her De­vane’s brain won’t al­ways work at his age lev­el, So at times he would be­lieve him­self to be younger and would act as such.

As a re­sult of the dis­or­der, De­vane has been bul­lied by class­mates since pri­ma­ry school. This caused him to al­so de­vel­op psy­cho­so­mat­ic man­i­fes­ta­tions, in which he fell ill when­ev­er he was near the school. Leslieann says he has even con­tem­plat­ed sui­cide on pre­vi­ous oc­ca­sions.

De­vane is now a Form One Mor­vant Laven­tille Sec­ondary stu­dent, but the bul­ly­ing on­ly less­ened af­ter his moth­er vis­it­ed the school and had an­oth­er con­ver­sa­tion with his teach­ers and the school’s dean, with whom she dis­cussed her son’s con­di­tion.

Leslieann told Guardian Me­dia she no­ticed De­vane would not re­spond to her when she spoke to him at two years old. In her ig­no­rance, she feared he might have been hear­ing im­paired, so she took him to the doc­tor who found noth­ing wrong with the child’s hear­ing and “com­fort­ed” her by say­ing “the child was just ig­nor­ing you.”

As De­vane grew, she no­ticed his at­ten­tion span was very short, but even then she made no re­al fuss of it. Even af­ter recog­nis­ing that when­ev­er he was try­ing to grasp a les­son he would start hum­ming and tap­ping his fin­gers loud­ly on any sur­face he could find, Leslieann still did not view this as a se­ri­ous red flag.

It was on­ly af­ter his Stan­dard Two teacher at Moul­ton Hall Methodist Pri­ma­ry School kept in­sist­ing some­thing was wrong and ad­vised Leslieann to get De­vane eval­u­at­ed by a doc­tor via the Min­istry of Ed­u­ca­tion’s stu­dent sup­port ser­vices, was it of­fi­cial­ly es­tab­lished he was on the spec­trum.

With this di­ag­no­sis, doc­tors ad­vised that Leslieann talk with De­vane’s teach­ers to in­sti­tute a rou­tine sched­ule that would help him de­vel­op a uni­formed ap­proach to aca­d­e­mics. The same plan of ac­tion has been im­ple­ment­ed by Mor­vant Laven­tille Sec­ondary teach­ers.

“His teach­ers had said then he is ex­treme­ly bril­liant and if it weren’t for his dis­or­der, he could have sat the SEA ex­am in stan­dard three,” Leslieann boast­ed.

But deal­ing with De­vane’s dis­or­der has been very chal­leng­ing for Leslieann, who al­so has a dis­or­der which af­fects her joints and left her un­able to work since 2014. It took an emo­tion­al, fi­nan­cial and psy­cho­log­i­cal toll on her fam­i­ly and even­tu­al­ly led to her sep­a­ra­tion from her hus­band. In fact, she said had it not been for her el­dest son De­vante, 21, who has been their rock, she might have had a break­down al­ready.

“There aren’t enough sup­port ser­vices in place for par­ents of chil­dren with dis­abil­i­ties, or even for the chil­dren them­selves. And what lit­tle is in place, they are com­plete­ly in­ad­e­quate,” Leslieann ar­gues.

At the same time, she notes how grate­ful she was to the Child Guid­ance Clin­ic that re­al­ly tries to as­sist in the well-be­ing of par­ents and chil­dren deal­ing with dis­abil­i­ties.

“A friend of mine who is a par­ent of two chil­dren with dis­abil­i­ties told me about the Child Guid­ance Clin­ic. They pro­vide sup­port group ses­sions for par­ents of chil­dren with dis­abil­i­ties and coach­ing on how to deal with the var­i­ous com­plex­i­ties that come with the car­ing for a child with dis­abil­i­ties,” she ex­plained.

As the world gets ready to com­mem­o­rate World Autism Day to­mor­row, the 45-year-old Mor­vant res­i­dent is al­so ask­ing the au­thor­i­ties to be more mind­ful of this com­mu­ni­ty, say­ing there is a lot more to be done by the var­i­ous bod­ies tasked with work­ing in their in­ter­est.

“Oth­er than a se­lect­ed few NGOs that work very hard with very lit­tle help, there isn’t a pub­lic in­sti­tu­tion that tru­ly aids this com­mu­ni­ty. Par­ents are left to fight it out on their own. There aren’t enough trained pro­fes­sion­als in the school sys­tem, nor are there enough trained pro­fes­sion­als for ther­a­py and if you don’t have mon­ey to ob­tain pri­vate care, then you and your child are left to suf­fer.”

She said there is al­so a need for more coun­selling cen­tres con­ve­nient­ly placed across the coun­try so par­ents and chil­dren could have bet­ter ac­cess to them.

“Most of us had to leave our jobs to care for our chil­dren be­cause they lit­er­al­ly are left be­hind and for­got­ten about by every­one else.

All I am ask­ing, and I be­lieve I speak for many par­ents like my­self, is to have bet­ter sup­port ser­vices for us and for our chil­dren, so they can have a chance at liv­ing some as­pect of a nor­mal life.”

No lo­cal da­ta on autism—spe­cial­ist

In T&T, there is no ex­ist­ing da­ta on how many chil­dren are di­ag­nosed with autism or any dis­or­der on the spec­trum on an an­nu­al ba­sis.

Ac­cord­ing to Dr Prithivi­raj Ba­hadurs­ingh, con­sul­tant com­mu­ni­ty pae­di­a­tri­cian at the South-West Re­gion­al Health Au­thor­i­ty (SWRHA), our fig­ures are cur­rent­ly ex­trap­o­lat­ed from the glob­al sta­tis­tic which is one per cent of the pop­u­la­tion.

Asked if T&T had ad­e­quate sup­port sys­tems in place, Ba­hadurs­ingh said no, adding this was not just in the case of autism but gen­er­al­ly for peo­ple with all form of dis­abil­i­ties. He said the ex­ist­ing sup­port ser­vices need­ed much bol­ster­ing to be ef­fec­tive.

“Speech and oc­cu­pa­tion­al ther­a­py (OT) are not avail­able in any ma­jor way in Trinidad. To­ba­go has speech and OT in its pub­lic ser­vice but even that needs im­prov­ing, par­tic­u­lar­ly with the num­ber of avail­able ther­a­pists.”

Ad­di­tion­al­ly, he said there was a need for a lot more teacher aids in schools.

Asked just how stren­u­ous it was for par­ents of chil­dren with dis­abil­i­ties, he said it is very chal­leng­ing as it cre­ates a range of emo­tion­al dis­tur­bances, from emo­tion­al to psy­cho­log­i­cal and fi­nan­cial strains. He said they all im­pact the fam­i­ly. De­pend­ing on the ther­a­py need­ed and, in some cas­es, one child may need sev­er­al, Ba­hadurs­ingh said it is very cost­ly, even for mid­dle-in­come fam­i­lies.

“The spe­cial child grant is $1,500 per month but a lot of fam­i­lies had their grants cut last year and this year. It’s sup­posed to be changed to a dis­abil­i­ty grant which has not yet been prop­er­ly man­i­fest­ed.”

He said a lot of cou­ples break up when deal­ing with spe­cial needs chil­dren be­cause of the fi­nan­cial strain and oth­er de­mands.

Ba­hadurs­ingh said there was no iden­ti­fy­ing cause for autism or any dis­or­der on the spec­trum and al­though some re­search has sug­gest­ed there is a ge­net­ic pre­dis­po­si­tion, the per­cent­age is very low.