Autism Spectrum Disorder in Uganda

Autism Spectrum Disorder (ASD) also known as Pervasive Developmental Disorder is a range of disorders of which Autism is one disorder. People with ASD have common behaviours that include (see Wikipedia):

Social deficits and communication difficulties
Stereotyped or repetitive behaviors and interests
Sensory issues
In some cases, cognitive delays

It is unclear exactly what causes ASD, though genetic risk factors and prenatal and perinatal risks factors are thought to play a role. Historically an hypothesis linking ASDs to vaccines was proposed, this theory has been found to be false. Diagnosis of ASD is evidence based and requires a skilled clinician.


A 2012 research paper, Global Prevalence of Autism and Other Pervasive Developmental Disorders, suggests there is no information on the prevalence of ADD in Uganda. A survey of 32 papers published around the world from 1966-2003, Epidemiological Surveys of Autism and Other Pervasive Developmental Disorders: An Update, suggests prevalence of all ASDs is around 30 per 10,000 but recent studies show it may be as high as 60 per 10,000. There is evidence that a better understanding of ASD and definition changes may be responsible for the increased incidence. A 2009 survey of 43 studies from 17 countries, Epidemiology of Pervasive Developmental Disorders, suggests the ratio of male:female with ASDs is 4.2:1 and more recent studies suggest the incidence of all ASDs is between 60 and 70 per 10,000. 

Based on the 2014 estimate of the population of Uganda at 34,900,000 and a prevalence of 70 per 10,000 this would mean there are  244,300 persons affected by ASDs. Of which 197,319 are male and 46,981 are female.

This article, Student sets up autism school in Uganda, speaks about the first ever school for people with ASDs in Uganda.  The school was founded by Frederick Sembatya who studying for his Masters in Autism in Wales in the United Kingdom, the article says:

Fredrick Sembatya, who will graduate from the MA Autism course in September, devotes his time to raising awareness of autism in the East African country, where very little is known about the spectrum disorder.
He teaches parents the skills and interventions they can use with their children by organising workshops and providing them with helpful resources, as well as writing articles in the local press and regularly appearing on TV shows to talk about autism.
Fredrick is currently writing a guide for parents and guardians as well as medical professionals, in order to provide an insight into autism within literature that is widely available to the community.
He has now helped several children and young adults from the age of three to 21, in areas such as special needs education, behavioural management, social skills training and self-help skills, as well as speech, language and communication.
Many of them are now communicating well, with some attending mainstream school settings.
Fredrick said: “I feel blessed whenever I change the life of someone with autism. I hope that my guide will give direction to parents, teachers and medical professionals in Uganda on how to work with autistic children and young adults.”
The University of South Wales is one of the only institutions in the UK to offer a Masters degree in Autism. Fredrick had the opportunity to study the degree after winning a scholarship, and says it was a ‘dream come true’.
“Autism is one of the most challenging conditions in the world, with no known cause or cure,” he said.
“These challenges leave communities such as those in Uganda with very few people knowing about autism, who are left with no choice but to rely on traditional or non-evidence based approaches to define, diagnose and manage it.
Thanks to his studies at the University of South Wales, Fredrick was able to learn about some of the evidence-based interventions that can be used to help children and young people with autism.
“Because of the lack of information on autism in Uganda, some parents resort to using ‘witchcraft’ as a means of managing the condition, because they wrongly believe their children are possessed by demons.
“That is why it is vitally important that more is done to educate communities about autism and prevent parents from using the services of ‘witch doctors’ for spiritual interventions.
“I am so grateful to the University for shaping my career and my future. My studies have enabled me to change the lives of people with autism as well as their families.”
Fredrick and his students appeared on NTV television earlier this month when they took part in a sports gala, demonstrating what children with autism can achieve in the world of sport and providing more information about the disorder.
For more details on Fredrick’s work at the Teens and Tots Neuro Development centre in Uganda, visit Teens and Tots Neurodevelopment Centre.

I am not cursed, I can be helped

What is it like to be the parents of an autistic child in Uganda? Benjamin Opiro's parents tell his story in Autism: Raising a different child:

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”.

In summary, ASDs are a range of disorders that require a great deal of understanding from families and society. With education and knowledge the burden of stigma and prejudice faced by families can be relieved. Though there is a great lack of information about the numbers of people with ASDs in Uganda, people with ASDs are well represented in Uganda by organisations that educate, lobby and offer advice.

For more information on ASDs contact the Komo Center, the Teens and Tots Neurodevelopment Centre and Empowered autistic children uganda on Facebook.