What you need to know about autism

Antonnate Nyangoma, a mother of three, is an autism rights activist. The single mother uses her story to inspire other mothers who are still living in denial to accept, understand, care, and love their children living with autism.

Her last born daughter, Drucscilla Ainambabazi, was born prematurely 16 years ago. When she was six months pregnant, Nyangoma fell off a motorcycle and although she did not feel any pain, she bled for two weeks. She then went to hospital and the doctor recommended a scan to ascertain where the blood was coming from.

“I was given tablets and told to return to the hospital if the bleeding did not stop in three days. On the second day, I got a strong pain and I ran to a neighbourhood clinic and while I was still telling the doctor how I felt, the pain started once again, only stronger,” she says.

“A few minutes later, the baby came out but still in a sac. I was taken into a room and while there, I heard the baby cry and the nurses saying it was still alive. We were then referred to Mulago National Referral Hospital where she spent two months in the nursery because she weighed just 1.4kgs,” she adds.

While at the hospital, Nyangoma would pump breastmilk and feed Ainambabazi using a syringe since she could not suckle. When she attained two kilogrammes, she was discharged but they would routinely go to the hospital for review. Nyangoma had been taught about hygiene, feeding, kangaroo mother care and all the necessary care for a pre-term baby.

At home, Ainambabazi started hitting all milestones a normal baby would and because of this, Nyangoma went back to work. She did not notice any abnormality with her child until she was four years old.

“I realised that instead of walking properly, my daughter would tiptoe, she covered her ears when I played music, examined food by smelling it, covered her face and would hide over things that seemed normal. Most importantly, she could not talk,” she says.

READ: Everything you need to know about autism

At the hospital, a CT scan of the brain was done and Ainambabazi was diagnosed with autism spectrum disorder. Nyangoma was told that the disease has no cure. Although she tried taking her child to a normal school, here, she was constantly punished by teachers who did not understand her condition and this made her hate school. 

Nyangoma then took her to Dorna Centre, a school for autistic children and here she has excelled for more than eight years. She is very progressive and thorough in everything she does.

Neural disorder

While autism is a lifelong disorder, the degree of impairment varies and, therefore, functionality among the different individuals with autism also differs. According to Dr Richard Idro, a paediatric neurologist in the Department of Paediatrics and child health at Makerere University College of Health Sciences, autism is a neural development disorder characterised by repetitive behaviour, mood alterations, impaired social interactions and difficulties in communication. 

Children with autism have delayed speech, find trouble expressing their needs and emotions, tend to stay alone, do things alone and cannot look people in the eye. They also have rotative behaviour, follow routines, do things repetitively and love semblance of most of the things and any change agitates them.

 “If a child is diagnosed with autism, the area of the brain responsible for concentration attention, speech and memory is damaged,” he says.

Sign 

One  symptom of autism is the delay in speech and if they attempt to speak, the speech may not be contextual and often times, it is a repeated statement copied from another person. Some children become nonverbal or their speech is faulty.   

“A parent may also notice that such a child sits alone. Some parents worry that the child has a hearing problem but if there is a favourite TV programme or music that draws their attention, they will watch or listen to it,” Dr Idro says.  

Repetitive behaviour such as playing with their hands, following specific routines, hyperactivity, inability to sit still, epilepsy and learning problems are the commonest symptoms.

“A child psychiatrist or paediatrician would be able to assess the autism spectrum because it ranges from mild to severe and while some children have a few symptoms, others have more. This disorder cannot be noticed when the child is born but after a year or two, a parent or guardian may be able to notice it,” he adds.

Treatment

While there is no cure for autism, according to Dr Idro, there are several effective interventions that can improve a child’s functioning.

Applied behavioural analysis, social skills training, speech and language therapy and other interventions help children with autism to create a structured behavioural plan for improving their adaptive skills and decreasing inappropriate behaviour, improve their ability to navigate social situations as well as speech. 

Parent support groups help parents cope with the stressors of raising a child with autism and learn effective ways of responding to problematic and appropriate behavior for their child.

“Treating co-occurring conditions such as insomnia, anxiety, convulsions and depression is also important. While drugs and medications have been traditional responses to autism treatment, they do not fully address the problem,” Dr Idro says.

However, he adds, with stem cell therapy, a patient’s bone marrow cells from the hip joint are injected into the patient’s spinal cord. The cells impact on the patient’s immune system and restore the damaged brain cells.

Treating autism with stem cells improves blood and oxygen flow to the brain to help re-grow the damaged neurons and form new arteries in the brain but the therapy is more effective when the child is below 10 years of age.

Routine care 

Having a child with autism affects the whole family. It is important that all members of the family understand, accept and love the child. Managing individuals with autism requires a team of professionals working with a family according to Julius Oyeyo, an occupational therapist at Tunaweza Children’s Home. 

The occupational therapy helps the child attain independence with daily activities and address the sensory issues. A child with autism also needs a speech and language therapist that assesses communication and addresses the gaps the child might have such as paying attention, following instructions and playing. The special needs teacher helps them to apply what they have learnt in their daily life. Music therapy uses music to achieve non music skills such as social skills and attention. 

The family members are an important part of the child’s therapy in such a way that they should help the child master the routine and also speak a language that is also used by the therapist to avoid confusion. 

“Try as much as possible not to alter the routine and if there are any changes, let them happen gradually and not suddenly. Also, the punishments should be kept minimal because they trigger anger and aggressiveness since most of them have speech problems,” he says.

He also notes that there are some food stuffs that they react to; they may become hyperactive. Such foods include foods with a lot of sugar, milk and wheat products. “Parents with autistic children should try as much as possible limit these foods. 

[email protected]