Dr Rad­i­ca Ma­hase

Af­ter 11 years of ad­vo­ca­cy, I can say that autism is no longer as in­vis­i­ble in T&T as it once was. More peo­ple know the word, and more par­ents, teach­ers and even first re­spon­ders can recog­nise signs of de­vel­op­men­tal de­lays.

Every April, busi­ness­es share fly­ers, gov­ern­ment min­istries post on so­cial me­dia and there is pub­lic at­ten­tion around Autism Aware­ness Month. That is a change, be­cause years ago, autis­tic peo­ple were far more hid­den away and autism was rarely dis­cussed open­ly. But let us not fool our­selves.

Vis­i­bil­i­ty is not the same as progress. In typ­i­cal T&T fash­ion, we have be­come bet­ter at talk­ing about autism than build­ing a coun­try that tru­ly in­cludes autis­tic peo­ple.

That is the part many peo­ple still do not un­der­stand. Aware­ness and in­clu­sion are not the same thing. A fly­er in April or a min­istry post on Autism Aware­ness Day does not cre­ate op­por­tu­ni­ties for autis­tic peo­ple or make their lives eas­i­er.

In fact, many of the min­istries, or­gan­i­sa­tions and busi­ness­es that are quick to post about autism do very lit­tle to sup­port autis­tic peo­ple in any re­al way. It was strik­ing to see posts from in­sur­ance com­pa­nies that still do not cov­er autism-re­lat­ed ther­a­pies, or from the air­port, which has yet to im­ple­ment any mean­ing­ful con­ces­sions for autis­tic trav­ellers. So yes, peo­ple are talk­ing more, but very lit­tle has changed in any deep, struc­tur­al way.

When I start­ed Sup­port Autism T&T 11 years ago, there were no sen­so­ry-friend­ly events and very lit­tle re­al un­der­stand­ing of in­clu­sion. Peo­ple were talk­ing about autism aware­ness, yes, but not in­clu­sion. I was de­ter­mined from the be­gin­ning to cre­ate op­por­tu­ni­ties for autis­tic peo­ple be­cause I saw how eas­i­ly they were left out, in­clud­ing my own nephew.

Even some­thing as sim­ple as a Christ­mas par­ty could be­come over­whelm­ing be­cause of the noise, the crowd and the sen­so­ry over­load. That is why I pushed so hard for sen­so­ry-friend­ly events. I want­ed him to have some­thing he could en­joy too. If we were tru­ly an in­clu­sive coun­try, I would not have had to fight for this for 11 years.

I have said many times be­fore that the biggest prob­lem in T&T is that autism has in­creas­ing­ly be­come a busi­ness rather than a na­tion­al re­spon­si­bil­i­ty. If a fam­i­ly has mon­ey, they may be able to ac­cess as­sess­ments, ther­a­py, pri­vate school­ing, oc­cu­pa­tion­al sup­port and spe­cialised pro­grammes. But if they do not, they are of­ten left strug­gling, wait­ing, or sim­ply go­ing with­out.

It is un­fair that in­clu­sion de­pends on a par­ent or fam­i­ly’s in­come. Imag­ine in T&T, autism is a lux­u­ry is­sue, some­thing on­ly mid­dle- and up­per-in­come fam­i­lies are able to man­age.

That is what I mean when I say autism is still not treat­ed as a re­al na­tion­al pri­or­i­ty. If it were, we would see stronger sys­tems in place: more state sup­port for di­ag­no­sis and ther­a­py, more in­clu­sive schools, train­ing for teach­ers and pub­lic ser­vice work­ers, and far more se­ri­ous at­ten­tion to autis­tic adults. In­stead, too much still de­pends on par­ents fight­ing, NGOs strug­gling to fill gaps, and a few com­mit­ted in­di­vid­u­als try­ing to hold things to­geth­er. That is not a prop­er sys­tem.

What we re­al­ly need now is for the dif­fer­ent min­istries to come to­geth­er and de­vel­op a prop­er na­tion­al plan. Autism touch­es ed­u­ca­tion, health, so­cial de­vel­op­ment and labour, amongst oth­er things. It can­not be treat­ed like the re­spon­si­bil­i­ty of one min­istry, one NGO or one per­son. As more chil­dren are be­ing di­ag­nosed, as those chil­dren grow old­er, this is go­ing to be­come an even big­ger is­sue for the coun­try.

We can­not keep act­ing sur­prised every few years when fam­i­lies are ask­ing the same ques­tions about ther­a­py, school­ing, em­ploy­ment, sup­port ser­vices and adult life. A se­ri­ous coun­try would al­ready be plan­ning for that.

We al­so have a bad habit in this coun­try of mis­tak­ing pol­i­cy for progress. Pa­per doesn’t count for much, you know. We may have laws, poli­cies and of­fi­cial lan­guage about rights, equal­i­ty and in­clu­sion, but im­ple­men­ta­tion is where every­thing falls apart.

There is al­ways a loop­hole, an ex­cuse, a de­lay, or some­body pass­ing re­spon­si­bil­i­ty to some­body else. Fam­i­lies are still be­ing forced to beg for ac­com­mo­da­tions, ex­plain ba­sic needs, and fight bat­tles they should not have to fight in the first place. Rights mean very lit­tle when peo­ple can­not feel them in their dai­ly lives.

And that is why lead­er­ship mat­ters so much. We need strong lead­ers who are pre­pared to change the autism nar­ra­tive in this coun­try. We need lead­ers who see autis­tic peo­ple as hu­man be­ings with val­ue, po­ten­tial and rights, not as a bur­den, a char­i­ty case or an af­ter­thought in April.

We need lead­ers who are will­ing to move be­yond speech­es and pho­to op­por­tu­ni­ties and ac­tu­al­ly build sys­tems that work. Un­til that hap­pens, autis­tic peo­ple will con­tin­ue to be sec­ond-class cit­i­zens.

The truth is, autis­tic peo­ple in T&T have wait­ed long enough. They have wait­ed for schools to be­come more in­clu­sive, for pub­lic spaces to be­come more un­der­stand­ing, for ser­vices to be­come more af­ford­able, and for lead­ers to show re­al com­mit­ment in­stead of sea­son­al con­cern.

Aware­ness is im­por­tant, yes, but aware­ness alone is not progress. Re­al progress will come when autis­tic peo­ple are in­clud­ed in mean­ing­ful ways every sin­gle day of the year. Un­til then, all the fly­ers, hash­tags and pub­lic state­ments in the world will re­main ex­act­ly what too many fam­i­lies al­ready know them to be: plen­ty talk, and not enough ac­tion.