What many don't understand is often dismissed as witchcraft

By MICHELLE AYUMA

The space between the National Archives and the ever-crowded Ambassador bus terminus in Nairobi is sometimes equated to 'a house of lunatics'.

Here one encounters all shades of human behaviour. From desperate street preachers seeking to win the souls of indifferent passers-by rushing to nowhere, to hordes of herbalists touting their wares. Then there are the bawdy bus touts enticing commuters to board their vehicles. From somewhere high-decibel music assaults the eardrums or impatient drivers honking. This is an assembly of madness.

However, amid the din, sits a haggard-looking woman in a corner of building with a child on her laps. Ordinarily, one would be tempted to ignore the pair. After all Nairobi is a city of the absurd. Women hire children for begging. But the piteous look of the women is difficult to ignore. Even more depressing is the sight of the child, who onlookers say is a boy. With half his tongue out, the boy struggles to breath; his hands are pin-thin, while his sunken stomach and cheeks are testimony to his dietary requirements.

Demonic attack

"It is witchcraft," a woman whispers, and then throws a ten-shilling coin on the dirty bowl in the left hand of the boy’s minder – probably its mother. Another passer-by concludes that the famished boy is a victim of demons; yet another ‘diagnoses’ incest as the cause of such health condition.

However, on some squalid yellow manila paper spread on the dusty floor where the two sit, proclaims the boy to be an autism patient in need of special care. The only plausible explanation people think of is supernatural forces, which underscores the level of awareness of autism in Kenya, and Africa in general. Autism patients, says the society, "typically show difficulties in verbal and non-verbal communication, social interactions and leisure or play activities."

With medical and technological advancement having made it possible to detect the health condition, it behoves the Government to educate population on the actual cause of autism and provide support to families affected by the condition, says the society in one of its handbooks on the disease.

Medical experts say although autism affects four per cent of the population, roughly 1.6 million people, the campaign to create awareness has been slow. Such is the level of unawareness that few Kenyans know that April is the international autism month. There have not been activities that compare with those related to HIV/Aids, cancer, fistula or tuberculosis. Dr Elizabeth Kuria, a nutrition lecturer at Kenyatta University, says proper diet and high standards of hygiene are critical to autism management.

Says Kuria: "Parents are key people in teaching their children healthy eating. Parents have the primary role of raising children and teaching them everything." In her opinion diet and sanitation harm further the health of autism patients.

A manual developed by the Autism Society of Kenya recommends regulation of the uptake of certain foods that may delay the improvement of the condition. ASK says the patients should be put on casein and gluten-free diets. In its handbook that sheds light on the disease, ASK says research has not established what causes the condition except that in some cases it is hereditary or genetic.

"Nobody really knows what exactly causes autism. What is known however is that it is not the fault of the parents and there is no witchcraft involved? Moreover, it is likely that children with autism have a genetic predisposition towards it with full blown autism triggered by environment, which could be lack of oxygen at birth, maternal rubella, infections either naturally acquired or through vaccines and allergies."

Special needs

Help for autism patients has not been forthcoming, even in situations where parents and medical practitioners know the condition is brought neurological. ASK says that some children with the disorder hidden at home out of shame. The situation in Kenyan and other African countries make it even worse for lack of specialised institutions to take care their special needs.

"Over the years, there have been no educational programmes offered for autistic persons. However, this changed immediately when an autism unit was recently opened at the City Primary School, Ngara, Nairobi, in September 2003, with a donation of special catering equipment from the Safaricom Foundation," the society says.

Ms Rose Mwangangi, a pharmacist with Jacaranda Chemists, says autism-related medication is scarce and when available, the side effects complicate the treatment regimen.

Says Mwangangi: "At times, patients react to the medication, which could provoke other dangerous effects. This leads to withdrawal of the drugs from the market." In her view, the high demand and low supply of medication needs to be addressed urgently.

As a result of their special needs and without adequate awareness relatives and guardians autism resort to extreme — often inhuman — means of disposing of the problems.

Mr Moses Kanja of the Acacia Medical Centre says parents with autistic children tend to hide them away from the public. In some extreme cases, they are left to wallow in squalor.

"Most of these children are usually hidden back at home, thrown away or put away in children’s homes. In the African society, someone always gets blamed for the cause of such conditions. Autistic people are not retards, they are people with special needs," Dr Kanja says.

He says of Kenyan hospitals: "They rarely receive autistic patients. In the last two years I have dealt with only three patients." He says the cases are infrequent and that people are shying away from treatment centres."

In his experience with both public and private medical centres, "most of the autistic children lack proper support units like family." Kanja says.