Autism spectrum disorder (ASD)—a developmental disorder that impairs one’s ability to communicate and interact—can be a great burden for parents of affected children, especially in parts of the world such as Kenya where information about this condition is insufficient or hard to find.
First identified 70 years ago, the name changed from simply “autism” to ASD to include a wider range of complex deficits and difficulties with social interaction and communication.
These autistic disorders include early infantile autism, Asperger’s syndrome, and pervasive developmental disorder. At one time in Kenya, autism was associated with mental illness, curses or witchcraft. Autistic children were confined to their homes and young adults taken to psychiatric institutions.
The good news is that the situation for children with autism and their parents is slowly changing, thanks to increasing awareness about the disorder, complemented by the efforts of affected families to band together to share information and experiences.
Official data on autism prevalence in Kenya are not available, but the Autism Society of Kenya (ASK), a parent-driven organisation established in 2013, believes it could be up to 4%, or one autistic child for every 25 children. That is higher than the global average, which is one in 160 children (less than 1%), according to 2018 statistics by the World Health Organisation.
Examples abound of parents seeking guidance from the mass of medical studies, research and popular press articles about autism.
Take the case of Alice Mundia, whose son was diagnosed with autism in 2004. Like many parents in similar circumstances, Ms. Mundia did not know much about the condition. “Although I had heard a bit about autism, I never imagined I would have to deal with the condition in any of my children,” she told Africa Renewal.
“In Kenya there are no diagnostic facilities, and no guidelines exist on treatment or interventions, which leaves parents to ignorantly make decisions on the best interventions,” notes Ms. Mundia. An occupational therapist recommended sensory integration and speech therapy for the child.
To gain more knowledge about autism, Ms. Mundia volunteered for ASK. Later, in 2014, she helped set up the Differently Talented Society of Kenya, a psychosocial support group for parents of autistic children. The organization’s members share experiences on social media platforms.
Esther Njeri Mungui has a 14-year-old autistic son. She recalls complications during childbirth. Doctors later told her that her extended labour might have caused anoxia (lack of oxygen) in the child, triggering autistic symptoms.
Initially Ms. Mungui was not too worried, assuming, wrongly, that autism was a curable medical condition. She surfed the internet for information.
“Like other autistic children, [my son’s] autism condition is characterised by delayed milestones. He walked at 18 months, had not uttered a word at age 3 and was extremely hyperactive,” Ms. Mungui recalls.
Without access to educational facilities suitable for children with autism, Ms. Mungui started home-schooling her son. The experience inspired her to cofound the Lovewins Autism Centre in Nairobi in 2014. The centre has 16 pupils currently.
Many children with ASD grow up to excel in careers based in visual skills, music, math and art. Ms. Mungui’s son is a talented musician; he will sit for the Kenya Certificate of Primary Education this year.
Fifteen-year-old Nana Yaa is a fashion and beauty model. Her mother and mentor,
Mary Amoah Kuffour, a DTSK member and founder of Klicks Africa Foundation based in Accra, Ghana, says she felt better after she began appreciating the uniqueness of her daughter.
She created a Facebook page, “My journey with Autism,” to showcase her daughter’s milestones and modelling talent. Ms. Mundia says that autistic children are unique and that parents need to embrace their uniqueness.
Research shows that early diagnosis of and interventions for autism are more likely to have major long-term positive effects on symptoms and later skills. The disorder can sometimes be diagnosed in children before they are 2 years old. Some children with ASD whose development seem normal up to that point begin to regress at or just before that age.
“We made great progress through sensitivity to her dietary needs, sensory integration and biomedical interventions,” Ms. Kuffour says of her daughter.
There is the Son-Rise home-based program for children with ASD and other developmental disabilities, and applied behaviour analysis, a therapy that focuses on improvement in specific areas, such as communication, social skills and academics. However, this therapy is not universally recognized.
Several Kenyan autism organizations regularly organise seminars and workshops on health and nutrition, sexuality, early intervention, law and taxation. Parent meetings and sports days also provide opportunities for autism sensitization.
Organizations such as DTSK are lobbying the Kenyan government to design a curriculum that caters to people with autism to give them access to the job market and foster their integration into mainstream society.
The Autism Support Center (Kenya) (ASCK), a nonprofit, helps those on the autism spectrum and their families find access to education, therapy, assessment and mentoring.
ASCK coordinates several programs to engage youth with autism, aimed at improving their social interaction and participation in vocational training opportunities. It produces a monthly newsletter that provides healthy, special needs–friendly recipes and useful videos and articles.
In December 2007 the UN General Assembly designated 2 April of each year as World Autism Awareness Day (WAAD) and urged member states to raise global awareness of the condition. Autism and rights organizations around the world use the occasion to promote the latest autism-related research and advancements in diagnosis and treatment. The theme for 2019 was “Assistive Technologies, Active Participation.”
The hope is that these efforts—and others—will alleviate the plight of autistic people in Kenya.