When Felicity Ngungu, a grandmother of a 27-year-old autistic man, set up Kenya Autism Society in 2003, her aim was to create awareness and help parents ease their financial burden.
With many parents spending millions of shillings visiting one doctor to another, Ms Ngungu sought to sensitise the public on detecting the condition at an early age to avoid future financial strains.
New findings from the Autism Society of Kenya show that parents are spending a larger portion of their income on children diagnosed with autism.
Ms Ngungu, says some doctors often gives parents false hope that their children may be cured of the disorder with many spending millions of shillings on quacks who promise to do so.
“Autism is a disorder that is largely unknown among many people. Often children with this disorder are mistaken to be slow learners. The disorder is easier to manage once detected in the early stages of one’s life,” said Ms Ngungu.
Autism, often described in Kenya as slow learning, affects an estimated four per cent of the Kenyan children.
Working parents of autistic children are often the most affected.
A study released early this week shows that mothers of children with autism often see their careers affected as they confront greater demands on their time, inflexible workplaces and increased medical costs.
According to a new study by researchers at Washington State University Vancouver, based on a survey of 326 families, slightly more than half the women polled worked fewer hours to accommodate the needs of their child and three out of five had not taken a job because of their child’s autism.
To care for the child, one-quarter had taken a leave of absence and nearly as many had not taken a promotion. Nearly 60 per cent had suffered financial problems in the past year.
These are some of the experiences that led Ms Ngungu to raise awareness in Kenya on the subject and to encourage the many parents who had lost hope that the situation could not be managed.
She says public awareness will help parents stop spending big bills in hospitals with hope that the disorder will be cured and instead focus more on managing and rehabilitating people with autism.
“Our society has formed a culture of believing that a disability has to be physical. Many times even parents end up denying that their children are suffering any disorder as it is not physically portrayed. Autism being a behavioural disorder is often ignored and children suffering this disorder are dismissed as being indisciplined,” said Angela Mogaki, who runs an integrated centre for autistic children at City Primary School.
The centre relies on specialised staff and special learning materials different from those used in the mainstream learning.
“All these coupled with the special diet for autistic students make management of the disorder very expensive hence the need for more local support,” says Ms Mogaki.
On average, a student is expected to pay a total of Sh37,000 when joining the unit and for each term students pay Sh27,000.
The unit’s matron admits that although they receive subsidies from the Ministry of Education, there is need for more support so that the fees burden is lessened for the parents which she says is a factor that is locking out many from registering autistic students at the unit.
Experts advise that once a parent establishes signs of autism in a child, the first step is to liaise with medical experts and if the disorder is confirmed the next step is working out an appropriate diet for the child.
Since the rehabilitation of autistic children largely depends on their cognitive abilities, experts say it is easier to assist a young toddler than a child over 14 years, urging that more attention should be given to early detection of the disorder.
Autism can be detected at an age as early as two years and the general characteristic is delayed milestones after birth.
Autistic children tend to be slower than their peers with delayed speech development, disturbed sleep patterns, lack direct eye contact and are more silent unlike their peers.
Many of these symptoms are often ignored due to the little knowledge available about the disorder.
The Autism Society is pushing for the Ministry of Public to enact new guidelines that allow for faster diagnosis.
“We participated in formulating the guidelines for pre-marital and lower age assessment about three years ago and to date the ministry has not launched the said guidelines. This is a big challenge because there is little information about the disorder to the public. At the age below five years, the disorder is quite noticeable and more manageable,” says Ms Ngungu.
Although the government has expressed support for people with Autism, she notes that a lot more needs to be done especially to educate parents on how to detect the disorder in its early stages.
The Autism society depends largely on membership subscriptions from parents of Autistic children and occasional support from corporates and individual donations.
Lack of a more extensive budget over the years has made it almost impossible for the society to extend its operations to cover most parts of the country.
Until April 2010 when UNDP pledged to fund an Autism awareness programme in the eight provinces, little had been done in other parts of the country limiting the society’s operations to cover mainly Nairobi province.
The integrated unit does not offer boarding facilities further making it impossible to accommodate pupils from outside the city.
The society is banking on the three year funded programme from the UNDP to help it reach out to as many people living with the disorder as possible and hopefully establish an Autism unit in every province.