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Raising a Child with Autism; A mother's Ordeal

According to Amanya, autism, whose symptoms may include a sufferer acting in ways that seem unusual remains largely neglected as a health issue in Uganda. some of the symptoms according to her include, not wanting to interact with others, rejecting physical contact, avoiding eye contact, and a baby not responding to their name by the first birthday

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By the time they make two years, many babies would have started making murmurs, playing and uttering a few words. But this is not the case for for Jayden who cannot say a word, even at five years.

Jayden was born with Autism Spectrum Disorder (ASD), a brain development condition that causes social, communication and behavioural challenges in both children and adults. At the time, his mother; Claire Amanya sought help from an expert at one of the biggest private hospitals in Kampala.

Jayden was Amanya’s first baby after seven years of trying to conceive.  Amanya, a lawyer by profession, told URN that she had researched a lot about pregnancy and baby milestones and knew what to expect at every stage of the baby's growth.

She realised that the baby was not growing normally. But doctors at different hospitals said he would outgrow the abnormalities she was noticing without any medical intervention. 

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Amanya said she would only find help after the headteacher of the day care centre discovered her son’s challenge and directed her to a specialist who later confirmed that the son was autistic.

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According to Amanya, autism, whose symptoms may include a sufferer acting in ways that seem unusual remains largely neglected as a health issue in Uganda.  some of the symptoms according to her include,  not wanting to interact with others, rejecting physical contact, avoiding eye contact, and a baby not responding to their name by the first birthday

She adds that to the general public, the condition is misunderstood and held with a lot of myths that many times people have said she sacrificed her child for riches.

On his part, Dr Derrick Kizza, the Executive Director of Mental Health Uganda, an NGO that advocates for the rights of people battling mental illnesses says that children with the disorder that manifests differently in various people can be helped live a better life once detected early. Although he notes, health workers in Uganda are largely unaware of intellectual disabilities as a condition that can be treated.

Because of this, he says, many children are never diagnosed but the few that are linked to care are often taken to facilities like Buitabika hospital and end up being treated for different mental illnesses that can have some similar symptoms.

Information about the prevalence of autism in Uganda is scanty. But according to the Uganda Bureau of Statistics figures, ASD prevalence is put at 70 out of 10,000 persons. Countrywide, about 388,000 suffer from autism and in terms of regional share, the Eastern region has the highest number of children at 113, 000 and the lowest number is in the northern region with 80,000 sufferers. 

Amanya says autistic people are not mentally disturbed but need a lot of support to be able to live a near-normal life. She says there are a lot of therapies that help them including feeding, occupational and sensory therapy but can only be helpful if parents or caretakers of these children are trained.

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Kizza also says that in order to help children with autism, there is need for the government to set up special education centres where trained personnel can be able to cater for their special needs since this group are not considered to be among people living with disabilities.   

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