Mother navigating trials of raising son with autism

When Nakeeta Mullings had her son Delvian Brown Jr, affectionately called DJ, in 2017, she was happy for her new bundle of joy and excited to see him grow.

At seven months, he was saying some words, but Mullings noticed something was off. He wasn't hitting milestones like other babies she knew. Concerned, she brought it up with his paediatrician, who she said dismissed her concerns.

"He's just slow because he's a boy," the doctor allegedly told her. But Mullings was unconvinced. She realised that DJ wasn't holding onto objects properly. By nine months old, he had stopped singing and calling his name.

"He wasn't walking, and, when he did stand, he only used his tippy toes. There were other odd behaviours, too, [like] headbanging, hand flapping, and rocking back and forth. At first, I thought he was just enjoying music, but the movements continued even in silence," she said. But, every time she voiced her concerns to different doctors, she said the response was the same "He's a boy, they develop slower than girls."

Mullings started documenting DJ's behaviours, searching online for explanations. One word kept appearing - autism. DJ was eventually diagnosed with autism spectrum disorder (ASD) on October 19, 2019 at the McCamm Child Development Centre. In a 2021 Gleaner article, Professor Maureen Samms-Vaughan, consultant developmental and behavioural paediatrician, noted that speech delay is the most common symptom that Jamaican parents of children with ASD notice, and that they usually become concerned when their children are not speaking as expected by about age two years.

Initially, life with DJ was a whirlwind of sleepless nights, endless crying, and unexplained tantrums. Simple outings could turn into public spectacles, with strangers judging her parenting.

"The day-to-day [trials] that parents go through, especially raising a child with level-three autism, is frustrating enough. We really don't need the burden of people assuming we're bad parents," she shared. Food was another battle, as DJ refused to eat anything except snacks, early in his diagnosis.

"Even now, he is picky with some things because he only eats dumplings if his grandmother makes them, but he eats more food than he used to."

Getting help wasn't just hard, it was expensive. Therapists charged hefty fees, some taking money upfront and never following through. Sydia Allen, founder of the Jamaica Autism Academy (JAA), said many parents are left uncertain about their next steps after a diagnosis. The financial burden also quickly becomes a reality.

"With therapy costs ranging from $10,000 to $15,000 per session for different needs, whether it be occupational, physical or speech therapy, the cost becomes overwhelming, especially if the child is doing all of them," she said. Allen, who has two sons on the autism spectrum, has firsthand experience with the struggles of securing adequate education and therapy.

"My children have been to eight different schools, special education schools and regular preparatory schools, but none of them truly helped. It is difficult here in Jamaica to get aid for a child with autism."

The Early Stimulation Programme operated by the Ministry of Labour and Social Security offers intervention for children up to six years old; DJ benefited from this. However, while there are NGOs that offer educational and support group meetings, parents have to source the money for different therapies.

Despite the struggles, DJ has made progress. His tantrums have reduced by more than half, he is now potty trained, and, though his speech is still limited, he's becoming more responsive.

"Before, he wouldn't eat or sleep. He couldn't understand anything being said to him. Now, he follows pointing gestures and interacts more at school," said Mullings.

As April is celebrated as Autism Awareness Month, Mullings says Jamaicans are slowly understanding what ASD is.

"People don't really say 'handicapped' any more, 'special needs' and 'autistic' are more common terms," she said. "I advise people, if you don't have anything good to say about these children, just leave them alone and don't judge the actions of their parents who understand them," she added.

Allen's vision for the JAA is to establish a fully equipped campus, distinct from makeshift special-needs schools that repurpose existing buildings.

"We want a facility designed for them, where they can get everything under one roof: therapy, education, counselling," she said, urging the government to collaborate. As for DJ's future, Mullings is hopeful.

"I hope he talks so he can express himself, ask for what he needs, have conversations, bathe himself at least halfway, be able to carry more than just the clothes pin basket. I want his independence to be extended into school so that he will be able to write and engage more."