Raising a child with autism

Debora Charles, 59 and her husband, Elikana Charles, 67 are both worried about their 11-year-old daughter Neema Charles.

The couple who live in Igoma ward in Mwanza city have six children, Bernard (38), Mary (36), Deo (34), Elijah (32), Esther (30) and their last born, Neema who is marking her twelfth birthday this month.

Debora, the mother, says after staying for many years without having another child, she assumed she had reached menopause and thus she expected no more children.

“It was in late December 2005 when I realised that my womb was not fine. I decided to ingest some local herbs but that did not help much,” she recalls.

She adds that, in March 2006, her legs began swelling and she became very choosy on the kind of food she ate. It’s when they made up their minds to visit a nearby health centre for checkup when the results indicated that she was pregnant.

Deborah says it sounded awkward because she never expected to bear children anymore after such long period of time.

“I had almost eighteen years since I last gave birth to Esther and thus this again to me became something very unique,” she says with a smile.

Considering that her firstborn (Bernard) had three older children meant she was a grandmother making her even terrified. She only revealed the new development on her health to her husband.

Her timetable changed, she could be hardly seen outside, due to what she had and the environment itself. She had developed a habit of playing with her grandchildren at home while their parents left for various daily activities.

Watching gospel music and other local programs abruptly became her hobby. At times, she would direct the house help not to disclose to anyone that she was present.

“I felt upset, my face turned pale because of the shame, I felt if people especially my age mates could see me wearing free and spacious clothes again. I expected no visitors because. In general, I was upset,” Deborah says.

As time moved on, she got tired. Watching was now not all that necessary again. Sleeping the whole day took most of her time.

Some say there are things to hide but not health issues. In August 2006, Deborah says she recalls it as if it was early today. Her pregnancy was about eight to nine months. Her husband hired a taxi and escorted her to the hospital.

She was taken to the hospital though the couple was not comfortable since they discovered that they were expecting a newborn, they never attended antenatal clinics.

“I thank God that there were very little questions that I had to answer before the nurses and other staff members at the hospital. My delivery was normal and successful and I only stayed in the hospital for just two days and was discharged. I gave birth to a baby girl, Neema,” she narrates.

Deborah and her husband, Elkana told Your Health that their child was very healthy and weighed about 4.5 kilograms.

As time moved on Neema grew like any other child. There was neither doubt nor question about her health development. They assumed she was well.

When the child marked her third birthday, something started bothering these two parents; no one wanted to be the first one to ask of what she or he had noticed about the youngest member of the family.

They say she was growing very fast and the same time was developing unique characters. They thought modern children could be behaving like Neema.

“She was hardly ready to play with her fellow children outside, most of the time you will find her seated alone, maybe playing with a cat or just alone,” the mother declares.

When Neema reached four years, her elder brother, Bernard who is a long distance transit driver, noticed that his young sister had something wrong.

Bernard took her sister to a special friend who was a doctor. It is he, who examined Neema and discovered that she had autism.

All her behavioural patterns pointed to autistic spectrum disorder.

Specialists say

Dr Gustave Bunami of Bugando Medical Centre tells Your health that autism is a range of conditions characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication, as well as unique strengths and differences.

“In most cases we receive cases from parents here complaining of their children that they do not hear, not that they don’t hear but this disorder has many hidden characteristics that are so hard to discover,” he admits.

He says autism is not of one type but of many, caused by different combinations of genetic and environmental influences.

He adds that, autism’s most obvious signs tend to appear between 2 and 3 years of age. In some cases, it can be diagnosed as early as 18 months. Some developmental delays associated with autism can be identified and addressed even earlier. He urges parents with concerns to seek evaluation without delay, as early intervention can improve outcomes.

“If you have concerns about your child’s development, early intervention is important. Learning the signs, examining your child’s developmental milestones and getting an evaluation and treatment as early as possible can make a lifetime of difference,” Dr Bunami explains.

Currently Neema is growing older and spends most of her time with the mother. She talks when she feels like doing it but can decide to be quiet and alone in the house, the whole day.

On her side, Deborah, Neema’s mother says there are many cases in the community; only that illiteracy hinders many to identify autism and take action.

She at times regrets why she gave birth to Neema adding that this happened because she was already old and never had all the required features in her body to bear the child at such stage.

“When I try taking her to school she refuses and cries. This has made me to just stay at home and look after her and she falls sick often,” she regrets.

Causes

According to Dr Leonard Subi, an Early Childhood Development expert and Mwanza Regional Medical Officer, experts are still uncertain about all the causes of autism. In all likelihood, there are multiple causes.

It appears to be that a number of different circumstances including environmental, biologic, and genetic factors which set stage for autism and make a child more likely to have the disorder.

“In a few cases, autistic behaviour is caused by untreated Phenylketonuria (PKU) when the body lacks an enzyme needed for normal metabolism and that is why in most cases the disorder is diagnosed by exclusion,” Dr Subi explains.

Treatment

Meanwhile, Dr Cecilia Protas from Bugando Medical Centre says autism is not a disease, but a developmental disorder that encompasses a broad spectrum. Methods that are effective for a profoundly affected person with autism may not be ones one would want to employ when working with a very slightly affected person.

“You have to consider the whole person individually, as well as what treatment options there are available in a prescribed region when determining what course to follow,” she says.

She informs that most parents and guardians do not realise this disorder on time. That triggers the number of children with these characteristics multiply. She never wanted to disclose the number of cases reported at the facility with autism.

Community and advice

Many residents interviewed by Your Health suggested that the government could have built some local health facilities aimed to conduct research from home to home and get to make early diagnosis of autism and make interventions.

“This problem might be very big amongst ourselves, it is hard to identify if a child has it or not. One may think that a child has his or her own uniqueness, little could it be noticed as a disorder,” says Charles Muniko, a Mwanza resident.