Breaking silence on autism only way to dealing with condition
Autism is a neuro-development disorder affecting an estimated two per cent of the world’s population with 90 percent of them being unable to use speech even though they can hear. The condition often appears during the first three years of life. Autism has been ranked as the fastest growing developmental disorder by Autism Society of Kenya. Muthiru Chege, Programs Director at the Autism Society of Kenya spoke to Joyce Chimbi about the little known condition.
Question: What is autism and why is it that despite the condition have been discovered in 1943 not much is known about it?
Answer: Autism is a mental disability which has a biological basis and is characterized by three impairments. They have a problem communicating, socializing and their imagination is significantly impaired. To diagnose autism all the three impairments must be present.
Autism is not treatable. It is a long life disorder and is therefore not a disease. A person with autism does not take medication but there are ways to manage it especially when detected early between two to five years, just before a child begins going to school.
It is the work of the medical fraternity to diagnose autism in children, this does not always happen because medical experts say autism is not included in their curriculum.
As in any other developing country, research and treatment options into disability, particularly mental disability is a new development. This means that there is a huge information gap among the professionals and the public. This has caused a lot of misunderstanding of autism.
Besides Kenyatta National Hospital, only two other hospitals in the country can diagnose autism.
- What causes autism and how can it be prevented?
A: Until 1943, autism was grouped together with other mental illnesses until it was discovered that it is a mental condition. But this discovery has not led to further discovery of what causes autism so as of now the causes are unknown.
But there are predisposing factors which include; biological, diet and disorder in the gut system which is made worse by certain antibiotics, certain diseases such as meningitis, lead and mercury. Vaccinations for children are stored in mercury and that is why it has long been suspected that this could be a contributing factor.
It is believed that genetics are involved because if one identical twin has autism, the other one will also certainly have it. But this is not the case for fraternal twins where one can be autistic while the other is not.
Drugs, particularly certain antibiotics can predispose a child to autism. Certain foods can also contribute to this condition. People with autism for instance must avoid foods that contain gluten which is basically anything made from wheat flour.
They also must avoid casein which is a phosphors-protein of cow, camel and goat milk.
- How can families with an autistic child manage the condition?
A: Our model for the management of autism in Kenya is basically two-fold through proper diet and occupational therapy called sensory integration. Certain professors have identified that in people with autism there are three organs that are usually affected; pancreas, liver and the small intestines. This means that their diet must be managed. Many parents do not know this and they continue feeding their children with food that make the condition worse and so upon diagnosis, parents must be given a diet sheet with do’s and don’ts.
These families need support themselves and a lot of information since about 70 percent of marriages end because of the pressure of dealing with an autistic child, especially because it tends to affect the first born. Young couples faced with an autistic child end up breaking under the pressure.
This is because people do not understand when an autistic child does certain things. For example, a child with autism whose sense of touch has been affected tends to hate being touched and many think that they are just throwing a tantrum. Others whose sense of sight is affected cannot handle too many colours all at once. The colours are too much and they feel like their brain is on fire since they are trying to process all the colours.
A child with autism must receive five hours of therapy per week. Occupational therapists are experts in the social, emotional and physiological of various illnesses and conditions. They study growth and development in the child, particularly how they interact with the environment. They help these children, to as much as possible, overcome the challenges that autistic children face.
- Are there challenges and gaps in the management of autism?
A: Autistic children must be rehabilitated before they are taken to the teacher but what we see in Kenya is that autistic children are taken to school and the teachers are expected to rehabilitate them. Unfortunately teachers are not trained in this area but in applied behaviour analysis where they rectify behaviour that is either learnt or acquired.
Rehabilitated autistic children can go to any school and learn but since they have some disability, they should not be tested like other children. There are certain subjects that autistic children cannot comprehend. For instance, since their imagination is affected, they cannot perform well in for example writing a composition.
We only have one special school for autistic children, City Primary Autistic Unit and they go through the same curriculum as other children but with specially trained teachers.
Understanding the need for therapists dealing with the brain is still a challenge. People are used to physiotherapists. Though autistic children must receive five hours of therapy per week, in public hospitals they often get one hour per month due to the high demand but few therapists.
There are no statistics to show prevalence of the condition in the country. This affects policy and decision making.
- Are there any successes so far that the country can build on?
A: There is very little to write home about because of the huge information gap. The level of awareness is still very low regarding autism and we have many children being put on medication or diagnosed for mental illnesses while what they have is autism.
But we have begun an aggressive advocacy and awareness creation campaign where we have so far covered 21 counties with plans to roll out across the country. We have been engaging medical professionals so that we can all work together towards bridging the information gap.
- What is the way forward?
A: We need to undertake a comprehensive study to show the prevalence of the condition. Recent studies show that South Korea has the highest prevalence, for every 38 children born one has autism. In the United States, it is one in every 68 children. We need statistics. At the Autism Society of Kenya we see two to three children a day and we are not even a hospital, so many parents out there are suffering and do not know what to do with their children affected by autism.
We need to ensure that diagnosis is done early and intervention should begin while they are three years old.
We also need to have special schools for children with autism. Where children come from far, we can have a boarding school.