Challenge of raising an autistic child

By Sarah Nakasenge 

Before Prossy Nakanwagi’s son turned one, she thought he was just a peaceful baby. “[We comforted] ourselves that maybe he’s just taking his time, but as he started walking, he also started having unstoppable walks without getting tired. Then I suspected that something isn’t right with our child,” narrates the mother of four. Nakanwagi, a doctor by profession, got to know that her first baby is autistic at one year and a few months. 

It is often difficult for parents to observe signs of autism in their children. For Nakanwagi, this was their first child; it was, therefore, difficult to suspect that the child might have a problem because they did not have another child to compare behavioral patterns or development milestones with.

 “When we suspected that our son had a problem, we took him to several doctors but many of them didn’t see the problem,” she says.

The National Referral hospital Mulago has departments of different therapies but these units are already overburdened. Most parents get therapy from private practitioners and this comes with a high costs. While getting a proper therapist might be a challenge, Nakanwagi says even getting the service itself is very expensive, especially because it’s a continuous service. Many families can’t afford it. 

Accessibility of schools 

 “When our son was young, he hopped from one school to another, we bought uniforms from many schools, and by the time he was 7 years, we had gone to more than seven schools. And that goes with school fees, registration fees and everything that goes with taking a child to school. So the cost of raising a child with autism is very high: from diagnosis, therapies, and schooling – inclusive of a special diet that is usually recommended by specialists. All these strain a family,” says Nakanwagi.

There are schools that are supposed to address the needs of children with autism but the challenge is that the mild, severe, and moderate cases are mixed together and they end up coping with all the wrongs and rights, which detonates the child. 

The perception of society towards autism also worsens the burden of raising such children, with one parent often left to carry the burden. Stories of men walking out on their spouses are common. But Nakanwagi narrates a case where a mother walked out, leaving the child behind. 

“There are many families that have separated because of a diagnosis of autism,” she notes.

Managing diagnosis

Nakanwagi says early intervention is very vital. There is no curative treatment but with close monitoring, therapy and hard work, there is usually improvement and progress. She advises acquiring as much information as possible so that you are able to address the different needs and challenges that might arise. 

It’s important to simplify their environment. Scheduling or creating a routine helps most children. For instance, autistic children usually want to follow their daily routines of activities. 

It’s also important to be cautious when choosing treatment because some parents get desperate and end up with quack therapists. 

She adds that Pet Therapy is useful because interacting with animals improves social skills and communication. “For our son we introduced rabbits when he was young because we realized rabbits would be more communicative,” she adds. 

A lot of children with autism spectrum disorder have mineral and vitamin deficiencies. Supplementation is therefore crucial. 

Research indicates that the elimination of milk, red meat, sugar, and processed food like fizzy drinks is recommended.

Nakanwagi advises parents to identify parental support groups where they can share experiences, management, and how to cope.

“Mathew the Art Master” is Nakanwagi’s son, who is now 15 and has acquired skills through a trainer after his parents carried out tests and identified what he was able to do. Mathew designs art pieces for sale. 

DATA

According to Uganda’s 2014 census, the national autism spectrum disorder (ASD) prevalence rate was 70/10,000 persons in a population of 44,120,140. The central region leads with a total of 106,749, western with 99,470, eastern with 101,334, and northern region with 80,705, totaling to 388,258. Boys are four times more likely to be diagnosed with autism than girls.