Nass­er Khan

Ac­cord­ing to the Unit­ed Na­tions, one per cent of any pop­u­la­tion may be di­ag­nosed on the autism spec­trum. As Autism Month, April, comes to a close, the hope of peo­ple with the neu­ro­log­i­cal dis­or­der and their fam­i­lies is that they will be bet­ter un­der­stood and ac­cept­ed in so­ci­ety.

Amoy Boodoo spoke with the Sun­day Guardian about how she copes with a child di­ag­nosed with autism and the many chal­lenges she and her fam­i­ly have faced. She is the moth­er of Kendell, a teenag­er with lev­el one Autism Spec­trum Dis­or­der (ASD) and is al­so the pro­gramme co-or­di­na­tor for the Autis­tic So­ci­ety of T&T (ASTT).

Ac­cord­ing to the Cen­ters for Dis­ease Con­trol (cdc.gov), ASD is a de­vel­op­men­tal dis­abil­i­ty that can cause sig­nif­i­cant so­cial, com­mu­ni­ca­tion and be­hav­iour­al chal­lenges. There is of­ten noth­ing about how peo­ple with ASD look that sets them apart from oth­er peo­ple, but peo­ple with ASD may com­mu­ni­cate, in­ter­act, be­have and learn in ways that are dif­fer­ent from most oth­er peo­ple. The learn­ing, think­ing and prob­lem-solv­ing abil­i­ties of peo­ple with ASD can range from gift­ed to be­ing se­vere­ly chal­lenged. Some peo­ple with ASD need a lot of help in their dai­ly lives, oth­ers need less.

A di­ag­no­sis of ASD now in­cludes sev­er­al con­di­tions that used to be di­ag­nosed sep­a­rate­ly: autis­tic dis­or­der, per­va­sive de­vel­op­men­tal dis­or­der not oth­er­wise spec­i­fied (PDD-NOS), and As­perg­er's syn­drome. These con­di­tions are now all called ASD. (Di­ag­nos­tic Sta­tis­ti­cal Man­u­al-5) Peo­ple di­ag­nosed with lev­el one autism re­quire some sup­port, peo­ple with lev­el two re­quire sub­stan­tial sup­port, and peo­ple with lev­el three (most se­vere) re­quire very sub­stan­tial sup­port.

It should be not­ed that peo­ple can move across the spec­trum ac­cord­ing to their brain de­vel­op­ment, ac­cess to ear­ly di­ag­no­sis, ear­ly in­ter­ven­tion, and ap­pro­pri­ate ed­u­ca­tion­al and ther­a­peu­tic treat­ment.

Q: Tell us a bit about your­self.

A: I was born and raised in Ari­ma, where I grew up in a large fam­i­ly of four broth­ers and three sis­ters. We would of­ten re­fer to our noisy, fun-lov­ing fam­i­ly as "Eight is Enough." My fam­i­ly lat­er moved to War­renville, Cunu­pia, where at the age of 26 years I got mar­ried to my best friend. I am a proud moth­er of two hand­some young men Kendell (17 years) and Kennedy (15). I am a par­ent ad­vo­cate, vol­un­teer and pro­gramme co-or­di­na­tor at the Autis­tic So­ci­ety of T&T.

The last 15 years of my life has been spent learn­ing about ASD, work­ing hard to sup­port my el­der son, Kendell, who has autism. Giv­en that my own fam­i­ly strug­gles as one fam­i­ly and hear­ing the sto­ries of so many oth­ers, I feel it's very im­por­tant for me as a par­ent and mem­ber of ASTT to reach out and help peo­ple to try and un­der­stand Autism Spec­trum Dis­or­der and the chal­lenges faced by par­ents dai­ly.

As the par­ent of an autis­tic child, what is the most valu­able piece of ad­vice you would give to par­ents when they find out their child has autism?

Re­ceiv­ing a di­ag­no­sis of autism can be dev­as­tat­ing to some par­ents but for oth­ers, it can be a re­lief to have a la­bel for their child's symp­toms. Many par­ents can be over­whelmed by fear and grief for the loss of the fu­ture they had hoped for their child. How­ev­er, I would like to say to them don't give up hope. I would en­cour­age them to learn more about ASD, es­pe­cial­ly be­come "ex­perts in their child's autism" as each per­son is unique on the autism spec­trum. The di­ag­no­sis is im­por­tant be­cause it can open up doors to ser­vices and help par­ents learn about treat­ment their child can ben­e­fit from. I would en­cour­age them to join par­ent sup­port groups, and talk­ing to oth­ers may al­so help. Much of the in­for­ma­tion that will be help­ful to them is in the hands, heads and hearts of oth­er par­ents like them­selves. They are the key teach­ers in their child's life and while we need the sup­port of the ed­u­ca­tion­al sys­tems and pro­fes­sion­als to pro­vide all of the ser­vices our child needs, it is al­so im­por­tant to recog­nise what skills their child needs to learn so as to im­prove their over­all qual­i­ty of life. "You are your child's biggest ad­vo­cate, be his/her voice."

When was the ASTT start­ed?

Af­ter her son Kester was di­ag­nosed (in Flori­da) at age sev­en with autism in 1988, Mrs (Teresina) Sie­u­nar­ine, our pres­i­dent, wrote ar­ti­cles to the news­pa­pers and spoke on ra­dio. She shared in­for­ma­tion on autism and the trau­ma be­ing ex­pe­ri­enced and asked oth­er par­ents to meet at the Ki­wani's Club at St He­le­na, where the Nalis li­brary is now. About 15 fam­i­lies met and formed the NGO on May 31, 1990. Par­ents came from all over Trinidad and so this year, the Autis­tic So­ci­ety will be com­mem­o­rat­ing 25 years as a par­ent sup­port group and have to be recog­nised as achiev­ing this with­out a gov­ern­ment sub­ven­tion (to date).

What is the mis­sion of the ASTT?

To work with fam­i­lies to help in­di­vid­u­als with autism to achieve their fullest po­ten­tial through ed­u­ca­tion, train­ing and ad­vo­ca­cy for af­ford­able and ap­pro­pri­ate ser­vices. We al­so en­cour­age an autism-friend­ly en­vi­ron­ment.

What are the T&T stats re­lat­ed to autism?

We have read that autism is the fastest grow­ing de­vel­op­men­tal dis­abil­i­ty in the USA.

Lo­cal sta­tis­tics are not avail­able. How­ev­er, the UN re­cent­ly stat­ed that one per cent of every coun­try has peo­ple with autism so we may have about 13,000-plus in T&T, but the ASTT on­ly knows of at least 600 peo­ple with autism who are mem­bers of our or­gan­i­sa­tion.

What do you think is the biggest chal­lenge and, con­verse­ly, op­por­tu­ni­ty for the ASTT?

I think the biggest chal­lenge fac­ing ASTT is get­ting the Gov­ern­ment to sup­port as well as recog­nise the need for ear­ly di­ag­no­sis and screen­ing, im­ple­ment­ing ear­ly in­ter­ven­tion pro­grammes with trained teach­ers and aides, pro­vid­ing af­ford­able ther­a­pies for the fam­i­lies. We would like to see the rel­e­vant au­thor­i­ties such as the Min­istry of

Health, Min­istry of Ed­u­ca­tion and the Min­istry of Peo­ple and So­cial De­vel­op­ment im­ple­ment all the plans writ­ten in many pol­i­cy doc­u­ments.

On the oth­er hand, par­ents and fam­i­lies need to be­come em­pow­ered so they can be­come stronger ad­vo­cates and de­mand the ser­vices their chil­dren need so they can achieve their fullest po­ten­tial.

What are the some of the mis­con­cep­tions or mis­un­der­stand­ings about chil­dren with autism?

There are so many mis­con­cep­tions about per­sons with autism but I will just list a few at the top of my head:

�2 Many per­sons or the rel­a­tives feel that autism is caused by bad par­ent­ing. This is not so

�2 A child must make eye con­tact in or­der to un­der­stand ver­bal com­mu­ni­ca­tion from an­oth­er per­son. For some chil­dren, look­ing away from a voice of­ten re­sults in bet­ter com­mu­ni­ca­tion.

�2 All per­sons with autism pre­fer to spend their time alone. While I agree this may be so some­times, but peo­ple with autism may want to in­ter­act so­cial­ly but may not nat­u­ral­ly have the nec­es­sary so­cial skills. Some may al­so be fear­ful of typ­i­cal­ly de­vel­op­ing per­sons

�2 A child will grow out of autism. It is a life­long dis­or­der, but ear­ly in­ter­ven­tion and the right sup­port at the right time can en­hance a per­son with autism

�2 It is a men­tal con­di­tion/dis­ease.

�2 Peo­ple with autism are dan­ger­ous. While there are many in­di­vid­u­als who may ex­hib­it ag­gres­sive be­hav­iours, those be­hav­iours are al­most caused by frus­tra­tion, phys­i­cal and/or sen­so­ry over­load and sim­i­lar is­sues. It is very rare for a per­son with autism to act vi­o­lent­ly out of mal­ice.

�2 Stim­ming (repet­i­tive be­hav­iour like flap­ping or rock­ing) is un­de­sir­able and should be stopped. Repet­i­tive be­hav­iour like flap­ping or rock­ing can help some peo­ple with autism deal with chaot­ic en­vi­ron­ments or stress, or it may be a form of per­son­al ex­pres­sion and some­times com­mu­ni­ca­tion for peo­ple with autism

While these may be a few, there are many oth­er mis­con­cep­tions. I would like to en­cour­age peo­ple to ed­u­cate them­selves about autism to dis­pel all the myths and learn the facts.

What do you wish some­one had told you when you found out your son had autism?

First, I would like to say that Kendell was not of­fi­cial­ly di­ag­nosed un­til age six when we had the op­por­tu­ni­ty to trav­el abroad in 2003. I learnt about autism af­ter read­ing about it in a book I bought on the road­side in 1999 while on my way to work. His pe­di­a­tri­cian at the time dis­pelled all no­tions and re­as­sured me it was not autism and that he did not look autis­tic, he should be placed in­to a school so he could learn to con­form by fol­low­ing oth­er chil­dren. In 2000, ASTT was pre­sent­ing a par­ent/teacher train­ing work­shop and my sis­ter-in-law in­vit­ed me along. I had the op­por­tu­ni­ty to learn more about autism, the chal­lenges that lay ahead and strate­gies that will be use­ful

How­ev­er, at that mo­ment, I felt scared and de­pressed all at once about how the rest of our lives clear­ly was go­ing to change. I ques­tioned my in­abil­i­ty to shield him for­ev­er from judg­ment, ridicule, and mean chil­dren and adults. As I sat in my seat sob­bing in­side I wished some­one had held my hand at that mo­ment and re­as­sured me that every­thing was go­ing to be OK, re­as­sured me that get­ting the ser­vices that is need­ed will be easy to ac­cess and that my son will be fine.

What do you think T&T has to do to reach the lev­el of North Amer­i­ca and Eu­rope when it comes to op­por­tu­ni­ties for peo­ple with dis­abil­i­ties and leg­is­la­tion pro­tect­ing their rights?

T&T has not yet rat­i­fied the UN Con­ven­tion on the rights of per­sons with dis­abil­i­ties. We need bind­ing leg­isla­tives to be en­act­ed or amend the ex­ist­ing laws and then move on to the dif­fi­cult but not im­pos­si­ble task of en­force­ment. Once we put the nec­es­sary sup­port mech­a­nisms in place as they did, I be­lieve we can al­so be suc­cess­ful in T&T. I feel the Gov­ern­ment has the re­spon­si­bil­i­ty to be the fore­front of in­creas­ing aware­ness which would lead to ac­cep­tance of per­sons with autism and oth­er dis­abil­i­ties. There is an ur­gent need for our so­ci­ety to be­come a more car­ing one. A so­ci­ety that is will­ing to ac­cept dif­fer­ences and di­ver­si­ty. Per­sons with autism can con­tribute to our so­ci­ety and in­deed some busi­ness­es in the de­vel­oped coun­tries are now em­ploy­ing per­sons with autism es­pe­cial­ly in the IT field.

If some­one on­ly reads a cou­ple lines of this in­ter­view what would you want them to know?

I re­al­ly wished they would read the en­tire ar­ti­cle how­ev­er, I would like the read­ers to know you can ei­ther fight autism or em­brace it. I have done both and fight­ing takes too much en­er­gy. I am sure every­one else has al­ready re­peat­ed­ly told them about the down­sides, heartaches and the dif­fi­cul­ties fac­ing them on their jour­ney with autism. Life doesn't have to be per­fect to be amaz­ing and my son is liv­ing proof of that.

Do you think fa­thers gen­er­al­ly are ful­fill­ing their roles as in­volved peo­ple in the sup­port of their chil­dren with dis­abil­i­ties in T&T?

It can be very stress­ful for any per­son to walk this path alone and so many moth­ers have been do­ing it for such a long time. Join­ing sup­port groups are not for moth­ers on­ly! Over the years, I have seen an in­crease in fa­thers reach­ing out for sup­port but I am sure it will make a tremen­dous dif­fer­ence if more fa­thers take an ac­tive role in shar­ing the re­spon­si­bil­i­ties in rais­ing a child with autism.

While the fi­nan­cial sup­port is nec­es­sary, I al­so feel many fa­thers try to bury their emo­tions and may not know how to be sup­port­ive or how im­por­tant it is to share the re­spon­si­bil­i­ties of rais­ing the child with any type of dis­abil­i­ties. My hus­band re­cent­ly said in a TV in­ter­view that autism brings fam­i­lies clos­er and it cer­tain­ly did in my fam­i­ly. Kendell's suc­cess came about with both of us work­ing to­geth­er as a team to give him the sup­port he needs to face the many chal­lenges ahead of him. I could not have done this alone! Let me rephrase that–I could if I had to but I am cer­tain­ly glad I didn't.

How does the ASTT sus­tain its ex­is­tence and does it en­gage in fund-rais­ers?

Our main fun­der for the last sev­en years has been Re­pub­lic Bank's Pow­er to Make a Dif­fer­ence Pro­gramme. We have been re­ceiv­ing Deeds of Covenants from some com­pa­nies, do­na­tions from in­di­vid­u­als and var­i­ous groups. Pro­pos­al for fund­ing have been sent to rel­e­vant min­istries (no re­sponse yet). We sell T-shirts and pins through­out the year. We will be hav­ing our first fam­i­ly day/bazaar as a fund-rais­er on Sat­ur­day, May 23, so we are ask­ing per­sons to do­nate the fol­low­ing items to­wards our first event: food items (cans and bot­tles), toys, plants, books which we can use in our var­i­ous booths. If per­sons wish to do­nate they can do so di­rect­ly to any RBL ac­ct #340 005 630 201.

When is your next event?

The RBL Autism Aware­ness Walk which will take place on April 25, at the Queen's Park Sa­van­nah. Our first fam­i­ly day/bazaar on Sat­ur­day, May 23, from 1 pm to 5 pm. Our month­ly par­ent sup­port group meet­ing on Sat­ur­day, May 30, at 2 pm�4.30 pm.

We are at present prepar­ing for our Ther­a­peu­tic Sum­mer camp for chil­dren and adults with ASD in Ju­ly.

What is the biggest need/pri­or­i­ty of the Autis­tic So­ci­ety and how can peo­ple, the pub­lic, help?

Any or­gan­i­sa­tion's biggest need will be fi­nan­cial fund­ing. At the mo­ment, we re­ly heav­i­ly of RBL Pow­er to make a Dif­fer­ence Pro­gramme. We would like to get a gov­ern­ment sub­ven­tion. Cor­po­rate or­gan­i­sa­tions can do­nate by set­ting up Deeds of Covenant as part of their cor­po­rate so­cial re­spon­si­bil­i­ty agen­da (it is an in­cen­tive to re­ceive tax breaks). Pri­vate per­sons can spon­sor a child/adult for ther­a­pies and camp.

I think it is al­so im­por­tant for mem­bers of our so­ci­ety to start view­ing per­sons with any dis­abil­i­ty in a dif­fer­ent way.

We need to re­move the stig­ma as­so­ci­at­ed with autism. Mem­bers of the pub­lic can get to know a fam­i­ly who has a child or adult with autism.

I al­so be­lieve that per­sons in au­thor­i­ty who have a child or grand­child with a dis­abil­i­ty should be­come ad­vo­cates and not hide their child. It means that per­sons and fam­i­lies who have a child with a dis­abil­i­ty are still be­ing stig­ma­tised in T&T. I would en­cour­age per­sons to vis­it Autism Place.

What oth­er in­for­ma­tion about the ASTT would you like to share with our read­ers...con­tact in­fo, so­cial me­dia etc?

ASTT ex­tends ser­vices to adults and chil­dren with autism. We have adult recre­ation­al groups, so­cial/play groups for chil­dren, one-to-one ses­sions with par­ents and child, func­tion­al life skills train­ing. Week­ly mu­sic and art ther­a­py ses­sions. A day ther­a­py camp for chil­dren and adults in sum­mer va­ca­tion, sen­so­ry friend­ly movie nights, par­ent so­cial coun­selling to par­ents and per­sons on the spec­trum, month­ly par­ent meet­ings and train­ings. Per­sons wish­ing to get more in­for­ma­tion can con­tact the of­fice 646-5506 or 228-5508, e-mail autismtt@gmail.com. Per­sons can join our Face­book page and con­nect with us there al­so.

What is the most valu­able piece of ad­vice or in­for­ma­tion you would give to those who are liv­ing with autism or peo­ple close to those with autism?

This is and still is my per­son­al mantra "when they are at their worst, you must al­ways be at your best." A few years ago my sis­ter said to me "you know, Amoy, we (mean­ing my fam­i­ly) all will help if some­thing were to hap­pen" to my hus­band and I, promis­ing to help to take care of the boys, but they nev­er had the op­por­tu­ni­ty to take care of Kendell for 24 hours with­out me be­ing there and she won­dered what it would be like and if they would have been able to man­age with him. Over the years, I have al­ways en­cour­aged par­ents to help their chil­dren learn nec­es­sary func­tion­al life skills to be able to have some lev­el of in­de­pen­dence so they are not a "bur­den" for sib­lings or care­givers in the event they are not able to any­more.

I say this to my son all the time, that autism is just a word used by the doc­tors to cat­e­gorise peo­ple who have cer­tain dif­fi­cul­ties in spe­cif­ic ar­eas like the way they com­mu­ni­cate, or how they be­have, or how they so­cialise and make friends. I would say to him that all kids have chal­lenges, it's just that peo­ple with autism the be­hav­iours show up more. We let him know every day how proud we are of him for be­ing such a good child. We love him, and hav­ing autism does not change the way we feel about him or who he is as a per­son..