Autism: Raising a different child

Thursday April 25 2013

Nyamahunge and her children. Benjamin’s siblings are learning to adjust to their brother’s behaviour. PHOTO BY Faiswal kasirye

Benjamin Opiro started to sit when he was five months, crawled at eight months and took his first steps at nine months. But at one year, he couldn’t talk. Not even at four. Also, he still wore diapers because he failed to use the potty. He had never uttered a word ever since he was born. Then one day, when he was five, he said the words “Banana, banana, banana. Apple. Pineapple.”

To date, the memory of hearing those three words make Grace Nyamahunge, Benjamin’s mother beam. Together with her family, they had to wait for a long three days before Benjamin said another word. And this time, his mother on reflex recorded him as he spoke. For a while after, that seemingly meaningless sentence was Nyamahunge’s ringtone. It meant the world to her and her husband John Opiro, a civil engineer, that their son could finally talk. Speech was a reward because though he was born normally, Benjamin turned out to be different from the other children.

“He wasn’t attached to anyone, not even me,” narrates his mother in a pained voice, adding, “He never played with anyone either. He couldn’t talk or respond when I tried talking to him.” Instead, he woke up at about 6am every day, and watched TV most of the day. He particularly liked fast paced and loud music or movies. Sometimes, he went through newspapers. He wouldn’t read, he just flipped through from cover to cover again and again mechanically for about two hours.

Because he couldn’t talk, he cried whenever he needed something and whoever was taking care of him had to guess what he wanted. All this made motherhood much harder for Nyamahunge. Benjamin was also sickly. Once he had pneumonia, another time he battled with adenoids and was almost operated for obstruction.

At first, his parents simply thought he was finding trouble singling out one language to speak of the many used at home, hence the delayed speech. By two, however, Benjamin’s father was worried and secretly consulted his medical friends. One of them said it might be a development issue, something to do with the brain, and recommended a checkup at Mulago Hospital. The couple decided to browse on the Internet, and found he had symptoms of autism, said to be irreversible and that he would never talk all his life. That’s when they started really worrying.

“It kept me awake at night, wondering how he would manage in this competitive world, unable to talk. I dreaded my son having to use sign language, which most people don’t know,” Nyamahunge says.


Seeking medical help
At Mulago Hospital, he was diagnosed with attention deficiency hyperactive disorder. It meant he was hyperactive, so, his concentration was too low to learn a thing, unless it was taught repetitively. For example, for potty training, he had to be taken to a potty at the same time every day in the same kind of environment and repeated over a long period of time for him to learn that he had to ease himself. During the visit at the hospital, his mother was counselled on what to expect. The doctor said that usually if addressed below the age of five, the condition could be averted.

“We were told that though children like him would not excel in the 14 subjects at school, with a specialty though, they would be very good at it.” In denial, Nyamahunge, sought a second opinion in Nairobi at Aga Khan Hospital where it was confirmed that her child was autistic. “It was the most frightening moment in my life – learning that Benjamin had autism made me feel like my world was crumbling down upon me,” she, with difficulty, recounts.

With the friend she had chosen to stay with rather than at a hotel, they prayed as Nyamahunge asked God why, and wondered whether she was responsible somehow. The prayer helped keep the crazy imaginations at bay.

In the months that followed, Nyamahunge, the private-public partnership specialist at Strides for Family Health – Uganda, lost so much weight and interest in everything. During the day, she kept on wishing she was with her son hoping he would notice her when he saw her. At night, sleep was replaced with constant nightmares. Social life like partying was erased completely from the picture, and her husband, who seemed to suffer more calmly, was also pushed away as she became distant.

Then, there were his two sisters, who were confused about Benjamin never talking but instead fighting with them. Slowly, it was explained to them and they started appreciating and treating their brother the way they had been asked to. They are still adjusting, especially Elsie, the second born who is just a year older than Benjamin. One of the things that hurt the most was people openly wondering about his inability to talk like his age mates. Nyamahunge didn’t know how to explain to everyone his condition.

Opening up
The couple eventually had to, uncomfortably, explain his condition to neighbours when Benjamin developed a tendency of leaving home and wondering about aimlessly, so they could watch out for him. Thankfully, he eventually grew out of that habit. At three, he was enrolled at Daffodils for nursery school, where after term one, he was discontinued due to failure to catch up with classmates. When she mastered the courage to share her story with her fellowship members, another mother with an autistic child recommended Dawn Special Children Centre, in Bukoto.

On Benjamin’s first visit to the centre, he had a mixed range of behaviour, some of which are commonly noticeable with autistic children; others are noticeable with those with ADHD. He was there for a year and half and the mother says, it was a very constructive time for him. He was potty trained and his speech, social skills and concentration improved. Enough for him to be the master of ceremony at the year ender school event in his last term there. Nyamahunge proudly narrates: “He took us through the agenda bit by bit all from memory. He was amazing, many parents wondered what he was doing at the special children centre and that made me realise how far we had all come.”

He was, in fact, readmitted to Daffodils after passing the interview. “I was so happy that our son had enrolled in a ‘normal’ school,” she says. Her husband sent a beautiful message to everyone telling them about the news and thanking them for their support.

Benjamin is now a lot better but his speech is not yet perfect. Sometimes he launches into baby talk and is barely inaudible or understandable. He is very bold and outspoken. He is good with electronics, likes music and is a good dancer – he can break dance, spin and dance all kinds of dance moves. He is also a fast runner and he doesn’t easily get tired. His parents believe he is going to be successful once they have established what he is good at. His father fondly calls him the “10th wonder of the world”.

How to help your child if they suffer from the condition

Dr Henry Bukenya, a physician describes autism as a rare and severe mental disorder of childhood with an onset before the age of two and half years. It is medically known as Kanner’s syndrome.
It usually comes with severe difficulty in communication, developing language and the child may stammer, spilling a lot of saliva when they try to talk. They also have difficulty in engaging in social interactions making it hard to form relationships with other people.

The doctor says autistic people may have repetitive and limited partners in behaviour. This explains why Benjamin watched TV most of the time. They also resist any slight change of their environment and this might be just the colour of the curtains used or removal of one type of flower from the compound.

Dr Bukenya says autistic people have learning difficulties and for them to pick up they need to be taught the same thing for a long time. He says some of them are very intelligent and others are gifted in a particular thing.

According to the doctor, the cause of autism is not so clear but it is believed to be due to genetic factors or brain damage. Conditions like schizophrenia that affect the brain are believed to cause the condition. Different children exhibit different symptoms so in order to find out what exactly is wrong, a child with any of the mentioned signs and symptoms should be taken to a psychiatrist to help identify the specific condition.

Word of advice
Florence Namaganda a therapist at Dawn Centre for Children says, “The most important thing is to accept that your child has a problem and find help.”

She says parents also need to understand that autism is not curable and that there is no quick fix. “Once this has been understood, then, they will stop wasting time and money and a whole lot of emotions on a ‘cure’,” she adds.

For treatment of autism, early and continuous therapy interventions done consistently and patiently are the only ones that have been proven to work. Namaganda says that parents or guardians need to be on board and willing to invest a lot of time and emotions (positive) to help their child especially in the initial stages.
She says it is no easy task and involves a lot of hard work, but there are great rewards of seeing your child improve. It is also not good to compare your child with another because children are different and will therefore progress at different levels.

Namaganda says, there are a number of basic therapies done that help shape a child’s behaviour. These include:
· Speech and language therapy: Since difficulties with communication is one of the main symptoms observed in children with autism, speech and language therapy is one of the major services required for their general development.

· Dance/movement therapy: This fosters a child’s ability to relate, communicate and connect on a non-verbal level.
· Music therapy: This provides a natural, enriching environment for addressing goals in areas such as communication, social skills, sensory issues, behaviour, cognition, perceptual/motor skills and self-determination.

· Occupational: This increases an individual’s functional independence. This can be very effective in improving functional fine and gross motor skills, postural control and movement patterns, motor planning, self-help skills, hand-eye coordination and visual perceptual and spatial skills.