A mother’s lessons from raising a child with autism

Fred Sembatya, a teacher for children with special needs at Teens and Tots Neuro Development Centre, goes through a learning session with four-year-old Sean Kayongo.Photo by Edgar Batte

What you need to know:

Raising a child with a development disorder can be challenging. It takes a lot of patience, endurance, and time to do so. In this feature, a mother shares her experience and the lessons she learnt through taking care of a child who has autism.

For a moment, Sarah Kisitu was not sure what to think. Her son was always hyper but non-verbal. He had been interactive before, but after two-and-a half years, he lost the few words he could speak.

“I could not even hug him. He was always shouting and screaming. I could watch him go to a corner and scream. That is how he got relief. He would flap his fingers. It really destroyed me. He was in his own world,” Kisitu recounts.
She was getting various opinions and advice from people on what could have gone wrong with her son, with some people suggesting he could have been bewitched.
“They explained that my son was bewitched and that is why he jumps with his shadow,”says Kisitu.
From then on, the mother-son relationship was destroyed because Kisitu could not get close to her son.

Getting no answers
Even her search for answers turned out to be frustrating.
“The first paediatrician I consulted said my son had a hearing problem. I then went to a doctor and I was told to go and have his ears checked.

“I went to Nsambya Hospital, but they could not help me. I was referred to Abby Clinic Wandegeya, where I met a doctor called Chris who said because my son was hyper, he had to first be sedated so that they could examine his ears and try to establish the problem, Kisitu explains.

She adds: “I went to Kampala Hospital and my son was taken to the theatre. The doctors told me he could not hear. But back home, my house help said whenever my son heard an advert on TV that he liked, he would come running to watch it.”
The doctor advised Kisitu to buy hearing aids for her son instead, and enrol him in a school for speech therapy
She went to Bible House in Wandegeya where the hearing aids were being sold at Shs5.4m.

“I got second thoughts about spending all that money. I returned home and researched more on autism and found out that a person with the condition develops selective hearing, and takes long to digest sound,” Kisitu explains.
As her search for answers continued, a friend referred Kisitu to a neurologist.

“The neurologist diagnosed and confirmed that my son was autistic. His memory had started to regress and he had forgotten all that he had learnt. The doctor recommended I give him medication that would calm him if I wanted peace in the home since I was pregnant at the time,” she recalls.
When the medication was administered however, it only made Kisitu’s son weaker.

“He was in a mess. He would go to the corner and sleep like a person going to die. I called the doctor and he told me to follow the instructions I had been given. When I inquired more, I was told the medication was not meant for autistic children since they do not need any medication,” Kisitu explains.
The next trip was to Mulago National Referral Hospital where Kisitu sought to have her son’s brain examined and find out what was affecting his speech.

About the same period, a neighbour threw a birthday party for her son and invited fellow neighbours’ children. It is during this interaction that Kisitu learnt that her neighbour too had an autistic son.

They talked and the neighbour connected her to the school that her autistic child was attending.
It is during this period that she met Fred Sembatya, a special needs children teacher, who is also a speech and language therapist.

Sembatya also has a Master Degree in Autism from University of Southwales, UK. As a first step, Sembatya advised that Kisitu’s son be taken off milk and sugar. Kisitu says after two weeks, her son calmed down and she noticed a big difference. But he was already of school-going age.

“I realised there were no schools that take care of autistic children apart from Tunaweza, which had just started. Another school that I searched through the web was in Gulu. I was confused and since I was pregnant at the time, I almost had a miscarriage. So I decided to first give it a break as I continued to ask around,” she adds.

“Sembatya told me to bring the child for assessment. After undergoing examining, he told me it was okay for my son to act that way,” says Kisitu. Sembatya suggested that we start our own centre to cater for such children since there were several things they were missing at the school at which Sembatya was tutoring.

It is then that Kisitu decided to start a similar school, first with only her son. Today, the school has 21 children. Kisitu says it is different from the usual schools because they do not follow normal schedules, but rather specific programmes for every individual child.

Expert take
Sembatya says most of the children he handles have autism spectrum disorder. He says: “Autism is a development disorder. Currently, we do not know the exact cause or its cure. So what we do in practice is work on the symptoms that are behavioural. We also work on the sensory processing difficulties, difficulty in communication and feeding.”

He says there are children who are verbal and those who are non-verbal. He adds: “You find those with sensory processing difficulties who are hyper-sensitive to sound. You can speak to them and they block their ears. Some have concentration disorders and thus have what is called Attention Deficit Disorders (ADD) while others have Attention Deficit hyper active disorder (ADH). All this calls for us to cater for individual needs of these children,” explains Sembatya.

Special needs centre
He says at the centre, every child is attended to, based on individual needs, through what is called a function assessment system.

It helps to establish a child’s strength, needs and challenges.
“That means each child has a plan that they follow because none of the children is the same as the others so you cannot make them move at the same pace. They have different paces, they do things differently. You can find those that are interested in computers, balls, games so we use such interests to teach them skills for independent living,” he elaborates.
Sembatya says the number of autistic children is not known in Uganda, but says that it is a non-medical problem.
“I am carrying out a survey for my research dissertation to find out how much teachers know or have heard about autism in schools,” he adds.

The special needs teacher says his day starts at 7am every day.
He adds that while some people claim that it is possible to outgrow the condition, there is no known cure for autism yet. He explains that a child can outgrow the symptoms or behaviour but not completely cure from the condition.

Managing aggression in autistic children
Aggression is a common symptom in autistic children. Being a parent to a child with autism can be challenging in many ways. Not only does the condition lead to delays and problems with communication and social interaction, but it can also cause many behavioural problems as well.
Many autistic children exhibit aggression as a symptom of their condition. This often manifests as unexpected outbursts of biting, scratching, kicking, hitting, or throwing objects at people.

How to manage
When your autistic child acts out aggressively, it can make public outings and social situations difficult. Aggression puts added stress on people who care for autistic children, and dealing with aggressive behaviour can be extremely challenging for their parents, caregivers, and teachers.

In children with autism, aggressive behaviour is often used as a way to get attention, obtain something that they want, or get out of doing something that they do not want to do. And some children act aggressively merely because they find pleasure in acting that way and watching others’ reactions to their behaviour.

If your autistic child’s aggressive behaviour is interfering with his or her daily life, talk to your child’s doctor. A doctor can assess the aggressive behaviour; rule out other conditions that may be contributing to it, such as depression or epilepsy, determine which interventions may help; and refer you to a specialist, if necessary.

Certain behavioural interventions have been shown to be effective in decreasing aggression in autistic children. Doctors, therapists, and other health care providers can train and coach parents and caregivers to use techniques that can help prevent or limit behaviour that is related to autism. These interventions are often based on a method known as applied behavioural analysis and may include several different approaches.

Caregivers can learn strategies for preventing, reacting to, and stopping aggressive behaviour in autistic children. The goal is to reinforce positive behaviours and decrease negative ones, which can help your child learn to act appropriately in social situations.

For example, parents who are accustomed to giving autistic children what they want when they act out aggressively will learn to reward their children only when they act appropriately. Caregivers can also learn about the warning signs that precede aggressive behaviour, so that they can try techniques for curtailing it.

To be most effective, behavioural interventions should be performed continuously on a daily basis. Your doctor can help decide which behavioural interventions may benefit an autistic child most. It is important therefore to work closely with your child’s health care team to monitor the effects of any treatments, so that new interventions can be adjusted accordingly.

Source: Everydayhealth