Coping with autism in Uganda
The joy of every parent is to see their child healthy and happy.
Source : Nilepost
However, conditions like Autism deprive parent and child of that joy, especially if not understood.
After two normal births, Antonnate Nyangoma had no reason to expect her third child Drusilla Ainembabazi to be any different.
But Drusilla was born different on August 14, 2005.
Nyangoma first noticed that Druscilla was different because she was keeping pace with her peers in development at two years of age.
Nyangoma was puzzled that Druscilla was unable to talk although they lived in a fairly busy neighbourhood with lots of other children.
The first doctors Nyangoma consulted suggested that Drusilla was slow to speak because she had been born prematurely.
While pregnant with Drusilla Nyangoma had suffered an accident on her way to work.
The accident forced medics to suggest early delivery and Druscilla was born “a premature.”
Months flew by but the family noticed no sign Druscilla was about to speak or communicate her needs like any active two year-olds.
This is when panic set in as the search for answers yielded no satisfactory explanation of her condition.
Nyangoma confesses that in her desperation she traditional healers and medics alternately.
She went so far as to follow a dubious “cure” that involved letting the child sleep surrounded by crickets and other insects that “make noise at night.”
She sometimes fed the child on these insects.
As she tried to cope with three children, Nyangoma had her faith severely tested.
She switched faiths several times, “I became a Muslim, I got born again, slept in mountains, went to Bukalango thinking that the girl would talk. I did many things.”
Mt Sion Catholic Prayer Centre, Bukalango is a Charismatic site where pilgrims congregate to pray for divine intervention in their worldly concerns.
Only when she walked into Mulago National Referral Hospital did she finally learn what was “wrong” with Druscilla.
Druscilla was diagnosed with Autism.
This was in 2007.
At this point, the father of the children abandoned the family leaving Nyangoma a single mother. The frightened father could not accept that, “I can produce a child like that.”
The family’s relief was short lived as the doctors informed them that Autism has no cure.
Nyangoma was advised to, “Pray, accept and love the child.”
Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication.
In 2010, Nyangoma was advised to visit the Dorna Centre Home for Autism founded by Dorothy Nambi.
Nambi was inspired to start the centre because she has an Autistic child.
Nambi had faced many of the same challenges Nyangoma had to overcome.
Nambi says many Ugandans believe Autism is caused by the child being bewitched or cursed.
Nambi started Dorna Centre Home for Autism to, “Create more awareness” about the condition.
Druscilla is now one of many children at the centre with the condition.
Nambi hopes more people can learn that Autism is not a permanently debilitating condition since April is Autism Awareness Month.
Affected parents are now creating awareness on the disease across the country.
Dr.Moses Mayemba, the lead doctor at Save Children with Autism Uganda (SCAU) says there are both environmental and genetic causes to autism.
Dr Mayemba explains, “There are genetic and environmental factors. The commonest environmental factors are prematurity.
If a kid is born with low birth weight or if the mother has some illnesses during birth, this increases the likelihood of developing the condition.”
People with autism may be severely impaired in some respects but normal, or even superior, in others.
Unfortunately, most affected children are hidden from society with many families considering them cursed.
Not many children with Autism live independently after reaching adulthood, though some are successful.
The World Health Organisation estimated Autism affected 24.8 million people globally in 2015