Dr Rad­i­ca Ma­hase

My nephew re­cent­ly turned 22, and some­one said to me, “You’re so lucky he is grown now. I am still strug­gling with my five-year-old. At least you no longer have all the ex­pens­es for school and ther­a­py. I can’t wait for my child to grow up.”

For a mo­ment, I al­most en­vied the com­fort of that be­lief, the idea that adult­hood would some­how make autism eas­i­er and the ex­pens­es and wor­ries would sim­ply fade away. You see, some­times what peo­ple don’t un­der­stand is that the cost of rais­ing an autis­tic child ex­tends be­yond fi­nan­cial costs.

One of the most ob­vi­ous is the emo­tion­al and men­tal im­pact of tak­ing care of an autis­tic per­son. It doesn’t mat­ter how old they are, most par­ents and care­givers live with con­stant anx­i­ety and ex­haus­tion. Some are deal­ing with sleep­less nights, com­mu­ni­ca­tion dif­fi­cul­ties, chal­leng­ing be­hav­iours and the dai­ly pres­sure of hav­ing to ad­vo­cate for their child.

Paul Ger­ard Richards’ study of 385 par­ents of autis­tic chil­dren in T&T gives some in­di­ca­tion of how deeply this emo­tion­al bur­den can af­fect fam­i­lies. He found a sig­nif­i­cant re­la­tion­ship be­tween parental stress and par­ents’ over­all well­be­ing, with parental stress ac­count­ing for 42.6 per cent of the vari­a­tion in their well­be­ing scores.

In­ter­na­tion­al stud­ies al­so con­firm how se­ri­ous the im­pact on par­ents’ men­tal health can be­come. A 2021 study by Luke Kalb found that 65 per cent of par­ents rais­ing autis­tic chil­dren re­port­ed symp­toms of anx­i­ety, com­pared with 45 per cent of oth­er par­ents.

Sim­i­lar­ly, a study by Raziye Al­ibeko­va found that more than half of the par­ents sur­veyed ex­pe­ri­enced some lev­el of de­pres­sion. Im­por­tant­ly, par­ents who felt that their needs were not be­ing met re­port­ed sig­nif­i­cant­ly high­er lev­els of stress and de­pres­sion. This is an im­por­tant dis­tinc­tion be­cause it re­minds us that much of the emo­tion­al pres­sure does not come from the child per se, but from the ab­sence of ser­vices and sup­port for the child and the fam­i­ly.

The thing is, autism can change the re­la­tion­ships, roles and ex­pec­ta­tions of every­one in the home. It can cer­tain­ly af­fect the re­la­tion­ship be­tween par­ents.

Rais­ing an autis­tic child of­ten re­quires con­stant plan­ning, dif­fi­cult de­ci­sions and a lev­el of en­er­gy that leaves very lit­tle time for the cou­ple them­selves. One par­ent may car­ry most of the care­giv­ing, while the oth­er car­ries the greater fi­nan­cial re­spon­si­bil­i­ty. They may dis­agree about dis­ci­pline, ther­a­py, school­ing or how much at­ten­tion should be giv­en to their oth­er chil­dren.

A 2019 study by Gre­ta Goetz found that dai­ly par­ent­ing stress af­fect­ed the way cou­ples in­ter­act­ed. The re­searchers re­port­ed that it “neg­a­tive­ly co­var­ied with per­ceived pos­i­tive cou­ple in­ter­ac­tions in moth­ers,” mean­ing that moth­ers ex­pe­ri­enced few­er pos­i­tive in­ter­ac­tions with their part­ners on par­tic­u­lar­ly stress­ful par­ent­ing days.

The re­al­i­ty is that sleep­less nights, fi­nan­cial pres­sure and the ab­sence of respite can leave par­ents ir­ri­ta­ble and emo­tion­al­ly ex­haust­ed. In some fam­i­lies, con­ver­sa­tions be­come cen­tred al­most en­tire­ly on the child’s ap­point­ments, be­hav­iour, mon­ey, etc. while the re­la­tion­ship be­tween the par­ents is grad­u­al­ly pushed aside.

Don’t get me wrong, I am not say­ing that autism de­stroys re­la­tion­ships. Many cou­ples be­come stronger and more unit­ed be­cause of the chal­lenges they face to­geth­er. But re­cent­ly, al­most every oth­er par­ent I meet has a sto­ry about how the de­mands of rais­ing an autis­tic child changed their re­la­tion­ship. Some grew apart, while oth­ers even­tu­al­ly sep­a­rat­ed or di­vorced.

And let us not for­get the im­pact on sib­lings, many of whom be­gin tak­ing on adult roles from a very young age. They may help to su­per­vise their autis­tic broth­er or sis­ter, man­age dif­fi­cult sit­u­a­tions, ex­plain their needs to oth­ers and help with their dai­ly care.

At the same time, they may re­ceive less at­ten­tion from their par­ents, feel that they can­not com­plain or be­come ac­cus­tomed to putting their own needs aside.

A 2024 study by Se­bas­t­ian Trew found that sib­lings of­ten took on care­giv­ing roles, par­tic­u­lar­ly sis­ters car­ing for autis­tic broth­ers with in­tel­lec­tu­al dis­abil­i­ties.

Al­though the sib­lings spoke about lov­ing and pro­tect­ing them, some were al­so wor­ried about the re­spon­si­bil­i­ties they might have in the fu­ture. One sis­ter ex­plained, “I’d like him to be part of my life, but I wouldn’t have to al­ways be tak­ing care of him.” Her words cap­ture the dif­fi­cult bal­ance many sib­lings face: want­i­ng to re­main close and sup­port­ive while al­so want­i­ng the free­dom to build a life of their own.

There is al­so the fact that as par­ents grow old­er, they wor­ry more about what will hap­pen to their child when they are no longer here. They con­stant­ly won­der where their child will live, who will keep them safe and who will un­der­stand their rou­tines and needs.

These costs can­not be cap­tured in ther­a­py bills or school fees. In­stead, they are paid through strained re­la­tion­ships, sib­ling sac­ri­fices and the loss of peace of mind that comes from nev­er be­ing cer­tain about the fu­ture.

So, when that par­ent told me she could not wait for her child to grow up, I un­der­stood the hope be­hind her words. But I al­so knew the truth: autis­tic chil­dren grow up, but for many fam­i­lies, the wor­ry, re­spon­si­bil­i­ty and cost last a life­time.