According to the World Health Organization (WHO), one in 160
children has an Autism Spectrum Disorder (ASD). Worldwide, people with ASD are subject to stigma, discrimination and human rights violations. Further, access to services and support for people with ASD is inadequate. The situation is no different in Kenya. With just a handful of institutions offering an all-inclusive education system, fewer centres dedicated to special needs children and mammoth challenges getting the resources to furnish their needs.
Meet Sara Jamal. An American who arrived in Kenya eight years ago. Having studied psychology and Early Child Development (ECD), Sara started volunteering at a special needs school and immediately noticed the dearth of infrastructure and training for people with autism. Along with like-minded individuals – James Karanja and Grace W Manyara, she founded the Autism Support Center (Kenya) in August 2012. Sara sheds light on autism in Kenya.
BY JAVED KANA
What stemmed your interest towards ECD and working alongside children with autism in specific?
After completing my Bachelors in Science in Psychology, I was unsure of where to go next with my degree. I obtained a job at a Behavior Resource Center and began work as a Behavior Modifier in the home of children with autism and other behavioural challenges. Before taking this job, I was not well informed about autism as most of the kids in my school with behavioural issues were taught in separate classrooms or prescribed Ritalin to control them. Unfortunately, in a small rural town in the 90s, everyone was poorly educated on childhood
disorders such as this.
While working one on one with these children in their homes, I became passionate about continuing my education and then enrolled in a course on Early Child Development in order to understand more in depth where certain behaviours originate, how and if they should be modified, and ways to accommodate the environment to make it more conducive for learning.
You founded Autism Support Center (Kenya) in 2012. How was the idea initiated?
After moving to Kenya, I found myself, for the first time since I was 15, without any job and I didn’t as yet have rights to work in this country. So, I began to do some unofficial volunteer work at a school for children with special needs. The school was a bit over crowded and the resources were slightly lacking. But from what I was told, it was one of the better schools for special needs in Kenya. I also began to realise how bad the lack of support, awareness and services were for these kids here. Something had to be done.
While volunteering, I met another teacher named James Karanja and he too shared a strong passion to help children with autism and other special needs meet their potential. Through Jimmy, I met Grace Wanja Manyara, the mother of a vibrant young man with autism. She is a pioneer parent in the autism community in Kenya. Where ever we go, everyone knows John and Mama John. The three of us began meeting regularly and brainstorming our ideas, from there the Autism Support Center (Kenya) was created.
Kindly take us through some of the programs and activities you
conduct at ASCK?
ASC(K) is first and foremost an NGO. We receive donations from a
number of individuals and businesses in Nairobi and with that funding we sponsor a therapist that attends to a group of children in Kahawa Sukari. She sees the kids several times a week and provides them with essential therapy services that they otherwise would not be able to access. Donations also sponsor a Special Education teacher that works in the home of a young man with severe physical impairments that prohibits him from attending school. Two days a week she also attends a group of young adults with a variety of needs and teaches them valuable life lessons and how to think ‘outside the box.’ We would like to expand our sponsoring to reach more children in poor situations and would like to offer more free services if we can gain access to more funding and/or donations.
We are partnered with the International School of Kenya where they host us for monthly social events. The Embrace the Amazing: Social Butterfly events have been one of our most successful programs for almost seven years. Once a month, ISK holds a free social event at the school where students ‘buddy up’ with a child and they engage in art, play, music, and then indulge in a nice diet friendly snack. Our kids look forward to these events all month long.
At our center in Parklands, we provide therapy services that are essential for children with autism such as Occupational Therapy, Behaviour Modification, Sensory Integration, and Speech and Language Therapy. Our therapists have now been with us for years and have acquired great skills in improving the lives of our clients as well as developing a strong bond with them and their families.
For laymen, there is little information out there on autism. Even worse, there are several misconceptions about the condition. How would you explain autism to our readers?
Autism is a developmental disorder, typically diagnosed during the first three years of life. It is neurological in nature, affecting the brain in four major areas of functioning: language/communication, social skills, sensory systems and behaviour. The cause of autism is unknown. Research suggests that there might be different subsets arising from genetics, environmental insults, or a combination of both.
It is a “spectrum” disorder, and the various individual diagnoses are collectively referred to as autism spectrum disorders (ASD). Individuals on the spectrum range from those who are nonverbal with severe challenges that can include self- injurious behaviours and intellectual disabilities, to individuals on the higher end of the spectrum (known as Aspergers Syndrome) who are extremely intelligent, with good expressive verbal language, yet markedly impaired social skills and weak perspective- taking abilities.
Autism affects 1 in every 68 children (centers for Disease Control 2012) and continues to escalate at alarming rates. It is the fastest growing childhood disorder in the world. It is five times more common in boys than girls and is consistently prevalent around the globe, and within different racial, social, and ethnic communities.
Often autism is not detectable during the early years of a child’s life, say about four years or so. What are the early signs of autism that parents should know of?
Autism can actually be diagnosed as early as 18 months if there are strong indicators that milestones are not being met or if there are obvious behaviours that are not typical.
Early indicators are:
• Failure to respond to name
• Delayed babbling in babies
• Lack of eye contact
• Doesn’t imitate the actions of others
• Doesn’t interact with peers or others
• Prefers to play alone
• Does not interpret facial expressions or emotions of others
• Displays self-harming behaviour (headbanging, biting self)
• Delay in speech, or no speech
• Repeating what they hear verbatim (echolalia)
• Obsessive behaviour (forming attachment to odd items like plas
tic bottles)
• Walking on tip toes
• Hand flapping, body rocking, spinning
• A need for sameness and routine, may be thrown off if something
changes
• Overly sensitive to touch, sounds, smell…
• Under sensitive to pain
Early intervention is key for success in meeting milestones, developing important skills, and eradicating negative or harmful behaviour. The earlier autism is detected, the earlier a strong treatment plan can be put in place.
Although autism is a common condition around the world, in Kenya there is a stigma around people living with autism. Have you
experienced such instances during your practice in Kenya?
Sadly, we have experienced many instances of the stigma surrounding autism in Kenya. Several years ago, I was called by a young lady who knew of a neighbour near her that was a teenage girl with autism. The girl was being physically and sexually abused by her family and other neighbours. I reached out to newspapers and media in the hopes of telling her story and finding much needed support for the girl. At such a young age, she had become pregnant and miscarried several times and the abuse was going to cause lifelong problems for her. Luckily, a well-known newspaper covered her story and individuals interested in offering her support came forward.
I have met many young adults with autism that have faced this sort of abuse their whole lives due to fear of their ‘strange’ behaviours, misunderstanding when they cannot verbally respond, and being taken advantage of when they are unable to defend themselves. This stigma has improved over the years but only very slightly. We also regularly get calls from parents who can no longer cope with their child with autism and are looking for someone to take them away.
What are some of the common challenges that people with autism in Kenya encounter on a day-to-day basis?
Lack of government support. In America, families that have a child with a special need or disability receive monthly stipends and free therapy services. Schools are obligated to accommodate and modify classrooms and school work for SN students.
Poverty in Kenya is a huge challenge because of the cost of tuition for SN schools is extremely high and not all therapy services are
affordable.
Adults with special needs have great difficulty finding jobs due to the stigma that follows them. They are perceived as not being able to do good work, being unreliable, needing too much attention and help. All of these are simply not true. We have worked with young adults with autism that have successfully obtained jobs in companies such as Safaricom and they have proven themselves as valuable employees, and members of their families and communities.
Lack of knowledge and awareness causes huge challenges. I’ve been asked if white people can get autism, if autism can be caught like a cold, are they able to think for themselves, do they understand what’s being said to them. People need to understand that children and adults with autism are not abnormal, in fact, they are very normal but only some of their behaviours may differ.
Many parents who have children with autism can not afford to send their children to autism centers; can you share tips or activities that they can do at home to help develop skills of their children?
There are so many activities that can be done at home. We call this work a Sensory Diet. A sensory diet is a treatment that can help kids with sensory processing issues. It includes a series of physical
activities your child can do at home. It has nothing to do with food. Even just doing household chores such as washing the dishes can be a great sensory activity to do at home. It’s important to ensure that these activities engage several of the senses together. Here’s a short list of activities parents can do but the list can actually be quite long.
Suggested Activities to Provide Proprioceptive Input:
1. Jumping on trampoline, couch, or mattress
2. Jumping games to music
3. Jumping rope/obstacle course
4. Pushing a wheelbarrow/chair that has some weights gives resistance to the upper extremities
Suggested Activities to Provide Vestibular Input:
1. Swinging
2. Riding a scooter board in various positions
3. Any rocking or spinning toys or activities
4. Any skating (ice or roller) activities
Suggested activities for tactile input:
1. Various fabrics for playing dress-up
2. Playing with hands in Sand boxes, dried beans and rice, dried pasta
3. Finger paints
4. Blowing Bubbles
What kind of support do people living with autism need?
People with autism need the same kind of support that any person would need. Patience, compassion and understanding. Students with autis m may learn differently than their peers, but with patience and some simple modification they too can learn and grow. If we see a person in public who may be acting differently than the ‘norm,’ being compassionate by not staring or making comments about badly behaved children and poor parenting can be of great support. Our kids with autism may have more difficult behaviours than their siblings and cousins, but understanding why the behaviours are occurring and knowing how to help them cope can be of great support.
Otherwise, finding a good team consisting of therapists and teachers can make a world of difference in supporting a child with autism.
2nd April was World Autism Awareness Day. What is your message to the society that will hopefully change perception towards autism?
We should celebrate those with autism every day. They may be perceived as ‘different’, but isn’t being different better than being just like everyone else? How boring my life would be if not for all the people I’ve known with autism. They keep me on my toes, they give me reason to constantly learn more about them, they give me my daily purpose. They are exciting, passionate, they love fiercely, they are energetic and lively, they live for the moment. They overcome huge obstacles that most ‘normal’ people couldn’t overcome. For us at the Autism Support Center, every day is autism day, every day is a reason for celebration.