"Autism" is a Greek word meaning "to be highly withdrawn." Historically, children with autism in Kenya were hidden away in the house as they were considered a result of witchcraft or similar evil depictions.
Autism is a developmental disorder that begins in childhood and affects social interactions and communication ability. It is difficult to diagnose autism because the causes of the disease itself are still not fully understood.
Autism manifesting during early childhood and Asperger syndrome (AS)
Leo Kanner, an American child psychiatrist, researched a particular disorder in 1943. One year later, Hans Asperger, an Austrian paediatrician, researched a different disorder. They both named the different disorders “autism,” which led to some confusion in the past.
Nowadays, a distinction is made between autism, which appears during early childhood, and AS, another autism spectrum disorder (ASD) that typically only becomes noticeable after age three. Also known as Asperger’s, AS differs from other ASDs because patients’ language and intelligence remain unimpaired.
The autism spectrum classifies ASDs according to their degrees of severity and symptoms. The World Health Organisation (WHO) has called autism a “pervasive developmental disorder” in the International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10). For an autism diagnosis, noticeable difficulty must be present in three areas:
- the development of language, verbal and non-verbal communication
- social interactions
- narrow interests and hobbies, resulting from the unique way a person with autism processes information
From a medical point of view, autism is present at birth and people with autism perceive reality differently, making it challenging to process environmental stimuli. Stimuli are the many things going on in our environment captured by our senses.
Consequently, a person with autism can be completely overwhelmed in a situation where they are subjected to many stimuli in a short time. Such an encounter can confuse their social circle and eventually lead to social withdrawal and behavioural changes that can be difficult for an outsider to understand.
The intellect of people living with autism ranges from that of a genius to severe mental impairment. Moreover, Asperger syndrome occurs more often in males than in females, with estimates of the ratio of males to females affected ranging from 4:1 to 8:1.
No “typical” autistic person
There is no such thing as a typical autistic person. Stereotypical depictions of autism in the media have strongly influenced the public's image of this disorder. Persons with autism are not exclusively mute and highly introverted. However, autism can manifest itself through an extensive range of symptoms of widely varying degrees of severity.
People with mild autism have problems processing environmental stimuli and difficulties with social relationships. However, they often display above-average intelligence and language skills.
Savant syndrome in autistic people
The interests of people with autism are usually limited to certain areas. Some of them have exceptional abilities in a specific field, such as mental arithmetic, drawing, music, or memory feats.
These exceptional abilities are part of the “savant syndrome,” where persons with mental disabilities present high skill in some activity. The persons with autism that present such skills are known as “autistic savants,” and they represent about half of those with savant syndrome.
The causes of autism are not yet fully understood
The causes of autism are still not fully understood. However, several factors are known to play a role in its development. One’s genetic heritage and specific biological processes occurring before, during, and after one’s birth can affect the development of the brain and trigger autism.
The 1960s hypothesis that autism develops due to a lack of affection throughout one’s upbringing or as the result of childhood trauma is nowadays known to be baseless. Similarly, the contention that environmental toxins or vaccine additives can trigger autism is also unfounded. The US Food and Drug Administration (FDA) has considered such claims unsubstantiated since 2006.
Unrecorded cases higher in earlier years
The number of cases of autism has been steadily increasing over the past decades. Globally, the increase in the number of reported cases of autism in 2020 is predicted to be between 0.6% to 1%.
Several factors that are not linked to the disorder itself have contributed to this increase. They include the enrolment of children at school at progressively younger ages, for example, in cities like Nairobi and Mombasa. Such actions increase the chance of autism being detected.
Another factor is that modern-day parents are more attentive than in the past about whether their children are developing “normally.” Such alertness by parents means that detection of autism in children is higher than before, thus leading to an increase in statistics.
Furthermore, unlike before when there was little awareness about autism, today's society is more knowledgeable. The lack of awareness of this disability in the past could have contributed to cases not being reported. In contrast, the increased awareness in the modern-day translates to reporting of autism cases, thus increasing the numbers.
Difficult autism diagnosis
Diagnosing autism is generally very difficult. The disorder is primarily diagnosed based on the symptoms mentioned above. However, these symptoms are not unique to autism. Not every child who does not show interest in its surroundings or prefers to be on its own has autism.
It is generally challenging to make a conclusive diagnosis before 18 months. However, it is generally preferable to see a doctor immediately if one suspects a child might be autistic. Early detection of autism allows for treatment adapted to the patient from the disorder’s onset.
Nevertheless, therapy for autism spectrum disorders is not aimed at a cure, as this is currently not possible. Those living with the disorder will experience it throughout their entire lives. On the other hand, however, therapy can help alleviate these issues and improve the quality of life of persons with autism.
How to improve the quality of life of persons with autism in Kenya
1. Create awareness
The majority of the people in Kenyan society do not know much about autism. The attribution of disability to witchcraft in African society derails efforts to create awareness about autism in Kenya. However, debunking this myth on the cause of autism is a great way to fight related stigma and create awareness on the disability. Once people understand the condition, it will be easier for them to be supportive and welcoming to persons with autism. Society’s acceptance of the disability is a critical step to improving the quality of life of persons living with autism.
2. Promote inclusivity
As a developmental disorder, autism dramatically affects the ability of a person to interact socially and communicate. This impact could affect the efforts of persons with autism to participate in daily activities and live a quality life. However, there is a need to ensure that persons with autism in Kenya are not left behind by providing equal access to opportunities and resources.
One significant way to promote inclusivity for persons with autism in Kenya is through offering inclusive education as envisioned by Goal 4 of the Sustainable Development Goals (SDGs). Although the government of Kenya has tried to include persons with disabilities in the education system, gaps still exist.
A 2019 Geopoll and Kaizora study on Autism in Kenya found that only 59 percent of persons with autism attend formal schooling. The number is commendable. However, it is not good enough that 41 percent of persons with autism have no chance at formal schooling. The Kenyan government needs to bridge the gap because education offers a fair chance of succeeding in life.
Inclusive education also calls for recognition and addressing the biases that exist in the education sector. The 2020 Global Education Monitoring (GEM) Report noted that “inclusive education” is widely misunderstood in the global education circles. Consequently, the report called on education stakeholders to expand their understanding of “inclusive education” to include all learners, regardless of their disabilities, race, gender, or socioeconomic status.
This expanded understanding is key to education stakeholders in Kenya as they strive to achieve inclusive education.
Another way to promote inclusivity of persons with autism is through employment. The Geopoll and Kaizora study further showed that only 26 percent of Kenya’s persons with autism are in employment. The government and relevant stakeholders need to offer more opportunities to persons with autism to promote their inclusivity.
3. Counselling and support for caregivers
Bringing up a child with autism is not easy in Kenya. The parents or the caregivers have to deal with a myriad of challenges. They include stigma, lack of enough funds to cater for the therapy, and the psychological impact of the condition.
In the face of these challenges, counselling and support for the parents and caregivers of persons with autism are critical. The counselling will help keep their mental health in check and equip them with coping mechanisms. Such support will also offer them a safe space to express their fears.
4. Government support
The majority of persons with autism and their caregivers struggle with various challenges. For instance, medication and therapy for persons with autism are expensive and unaffordable for many people. Some parents and caregivers cannot work as they have fully dedicated themselves to caring for their children with autism. Consequently, the financial status of such households is not good, and the members live in poverty.
The government can alleviate the suffering of such families by offering free or subsidized therapy and treatment. In addition, the government should ensure that such families are not left out of the Cash Transfer for Persons with Severe Disabilities (PWSD-CT).