Arthur’s Dream Autism Trust (ADAT)
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In Kenya, the clearly diagnosed cases that have gone through the medical process are about 3,000 and these are children between the ages of 3 to 10 years. The ones who are who are not diagnosed and are suspected to be carrying one or the other traits of autism are more than 200,000 in the country. Where does this data come from?
The number of parents that ADAT has had to interact with who are asking questions such as school for kids with issues of autism or what other schools call learning disabilities, parents who are on the social forums that ADAT participates in discussing different ways to handle children with autism. Once they have a clear diagnosis, do not have information of where to go next. Once diagnosis is done parents end up in Kenya Institute of Special Education (KISE) or Kenyatta National Hospital (KNH). In both institutions there is only one person to assist the parent. Both have to work in tandem as one is assess the learning and the other does the medical diagnosis. When a parent starts the diagnosis at KNH they end up at KISE and when they start at KISE they end up at KNH. Each institution has one person handling diagnosis for the whole country and other people coming in from the region.
From the known 3,000 medically diagnosed cases, 67% of them are boys. The others are girls and the reason we have found why the statistics is not correct is because there are a lot of girls out there who are yet to be diagnosed. The reason is because according to most parents, a girl who is shy and cannot hold eye contact is an African thing for a girl to do. Nobody is telling parents that most of the traits you see that are socially acceptable are traits of autism. And therefore there is delayed diagnosis for girls.
And then there parents with children above 10 years of age who have children with autism. These data is not available and we hope to have it in the near future. We used a social media platform to get data from schools and parents. What we found out was that out of the 38,000 parents who sent data, 21,000 were boys. Most of them are in schools where the teacher has identified that they have autism.
Another reason why there is a challenge in getting statistics of children with autism in Kenya, is people are not going in for diagnosis for fear of stigma. We are hoping as ADAT to bring the parents out. Make them comfortable in their own skin. Make them comfortable as parents and then as parents of children with autism. To understand that their kids are just like any other kids but with special needs. They should also understand that they have a place in life.
The data that World Health Organization (WHO) and Center for Disease Control (CDC) are using globally when we relate it to Kenya, the 1 in 58 becomes 1 in 38 in Kenya. That for every 38 children in Kenya one is turning out to be autistic and that one is 80% most of the time a boy. The age of the parents does not matter as those who have been diagnosed come from parents who are in different age groups. The social class also cannot be used as a measure as those who are diagnosed come from different social classes. They span throughout from the very educated to the less educated.