HAVE ANY QUESTIONS? +254 20 366 1229
HAVE ANY QUESTIONS? +254 20 366 1229
Autism or Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterised by differences in the brain’s development, impacting communication and social interaction. This condition also includes varying behavioural characteristics, like challenges transitioning from one task to another, specific interests in objects or topics, and repetitive behaviour. Globally, 1 in every 100 children suffers from this condition. Despite its increasing prevalence, autism is, in most cases, and especially in many parts of Africa, diagnosed late, between the ages of six and eight years. This is because of the lack of awareness of neurological conditions, including autism, making its warning signs seem like “normal childhood traits.”
In this question-and-answer article, we feature a parent who knows, first-hand, the experience of raising an autistic child. Brenda Mwendwa – or Mama Leo- is a teacher, a mother to an autistic son, Leo, and an advocate for autistic children. She speaks about her experience raising a child with autism, and the benefits of early diagnosis and support for autistic children, their parents, or caregivers. The Q&A also features Patricia Kipkemoi, a health researcher who has conducted research on autism in Africa.
Can you share a bit about when you first noticed something was different about Leo, and what your initial reaction was when you first learned about his autism diagnosis?
Leo was born at Aga Khan University Hospital; he was a healthy baby, and I did not notice anything wrong with him at first. But at around five months old, when I had taken him for a normal clinic visit, the doctor told me that Leo was not kicking like other toddlers his age. I was confused because I couldn’t really understand what that meant, and I was not given a definite diagnosis at that time. However, I was given a diet plan and physiotherapy appointments for him. At around the time he turned two years, I began noticing signs that my son was not behaving and developing like other children his age. He was crying a lot, he had tantrums, he was extremely hyper, and he would hold something like a spoon or clothes-peg obsessively. He couldn’t stand having his hair shaved because he did not like the sound of the shaver. I continued taking him to his clinic visits, but things were not getting better. I consulted multiple specialists, and years of back and forth, at approximately three years old, Leo was diagnosed with autism.
What was your reaction when you finally had a diagnosis after years of uncertainty?
I was a bit shocked and confused. I went through a stage of denial, but I eventually accepted the diagnosis, and since then, I have been very intentional about creating awareness about autism.
What are the major challenges you have gone through?
The biggest challenge I dealt with for many years was finding a school for Leo. I took him to 13 schools for his primary school alone! I had to keep switching schools because most of them were not able to accommodate him. Most teachers did not really understand Leo’s condition; they saw his behaviour as indiscipline. An owner of one of the schools simply told me he could not keep a mad child in his school. I felt sad and frustrated.
However, when Leo got to grade five, I finally found a good school where the teachers understood him and accepted him as he was. He significantly improved in his schoolwork. He completed his primary education in the same school and performed well in his Kenya Certificate of Primary Education (KCPE) exams.
Another challenge I had, especially when Leo was a baby, was juggling between taking care of him and my job. At the time, I was a banker, and I almost lost my job because my boss would not understand why I was taking a lot of time off from work. It got so bad that I had to quit my job to take care of Leo. I was jobless for two years, which was frustrating as well because we had less finances for Leo’s care and the needs of the entire family.
The high costs related to Leo’s treatments and therapy sessions did not make things better. Caring for a child with autism is an expensive affair. The child needs multiple therapy sessions, clinic visits, and other treatments to help manage the condition, and these are expensive. It is one of the reasons I sympathise with parents like me who have children with special needs, not just autism. I was lucky enough to have some relatives who stepped in to help us with the expenses.
What does a typical day for your family look like? Has it changed from when Leo was a child?
When Leo was younger, I dreaded school holidays. Holidays were very difficult for me because during those periods, he would forget his routine, and it would be very difficult for him to go back to school. But nowadays, he is quite independent and responsible; he cleans his own room and helps with house chores. We still have challenges, for instance, he was recently diagnosed with Obsessive Compulsive Disorder (OCD). However, he has become more self-aware, accountable and positive about life, which makes coping with the evolving challenges more bearable.
Does Leo have siblings? How does he relate with them?
Leo has two younger brothers. After having Leo, I was worried and sceptical about having another child because of all the frustrations I was going through with Leo’s condition. But my doctor told me to be optimistic and encouraged me that Leo would be a great helper to his siblings. Thinking back to my fears at the time, I am amazed at how well he has turned out. He takes good care of his brothers and deeply cares for them. He usually tells us that he is happy to come home from boarding school because he misses his brothers all the time.
How does Leo interact with other children?
Leo has always played alone, even in the company of other children. It can be difficult for autistic children to create and maintain friendships, and I could see that in Leo. To help him, I decided to take him to a boarding high school where he could improve his social skills. The school is accepting of autistic children and provides a good environment for them to thrive and grow into responsible men. Nowadays, Leo is very friendly and even has a best friend from school.
What message would you share with employers trying to understand how to better support their employees who are parents of autistic children?
Most employers fail to understand why parents of autistic children often ask for time off work to care for their children. I would request employers to be more lenient and supportive of parents of children with special-needs and provide better medical insurance covers for them to be able to get treatment and management services for their children. For instance, some organisations offer an extra cover for employees with children who have special needs.
What do you wish that teachers understood about autism?
I think there is a need for a massive campaign to sensitise not only teachers, but also caregivers, and everyone else about autism. Teachers, especially, need to understand what autism is because, speaking as a teacher myself, I know that we are handed children with autism and other learning or behavioural challenges without prior training or guidance on how to support them, and sometimes, without even being informed that the children have any challenges at all.
Do you have any parting words?
I want people to really understand that autistic children need a lot of love and support because they face unique challenges everyday. As caregivers, our energy matters. If we carry negative energy, they will feel it too. That is why we must show up with positive energy, appreciate them for who they are, and do everything we can to help them reach their full potential.
Patricia Kipkemoi is a Post-Doctoral Fellow at the Aga Khan University Institute for Human Development who has done extensive research on neurodevelopmental conditions. She elaborates on the other health challenges autistic children go through, and other challenges in the diagnosis of this condition.
Brenda mentioned that Leo had tonsillitis and a hernia. Are those generally problems that other children with autism struggle with, or was it unique to Leo’s case?
There is a link between autism and challenges with the optimal functioning of the immune system. Studies have shown that autistic individuals may report more allergies and autoimmune conditions. This could possibly explain why Leo seems more prone to infections like tonsillitis. Other studies have found that autistic individuals, compared to neurotypical children, are diagnosed with hernias affecting the gastrointestinal tract, as well as other gastrointestinal problems like chronic constipation, persistent diarrhoea, and reflux. Other common co-occurring conditions reported in research include sleep problems, epilepsy, Attention Deficit Hyperactivity Disorder (ADHD), anxiety disorders, and learning disabilities like dyslexia or dyscalculia.
What are the challenges in the early diagnosis of autism?
There is limited awareness and expertise among healthcare providers, with few developmental specialists in the country – these include developmental paediatricians, paediatricians, child and adolescent psychiatrists, developmental psychologists, and child psychologists, with the few available being mainly concentrated in urban areas. Some children receive their diagnoses from institutions such as the Kenya Institute for Special Education (KISE) and the Education Assessment Resource Centres (EARC). This, however, may happen slightly later, when a child is already of school-going age. The referral pathways are also unclear as allied specialists such as neurologists, speech and occupational therapists are few, have many patients to take care of, and can be costly.
We are also missing accessible, affordable, validated, and adapted screening and diagnostic tools. There is currently work being done by researchers at the Aga Khan University Institute for Human Development and collaborators in other parts of Africa to validate an open-source autism screening and diagnostic tool. This is in the pilot testing phase, and hopefully, we will have the tool available for use with trained personnel.
There is also limited awareness and knowledge of autism in the general community, and being autistic or having a child with autism can be met with stigma or discrimination. Awareness and acceptance are greatly improving with a lot of work being done by families, self-advocates, advocacy and support groups, healthcare workers, and researchers to share information on autism and demystify the condition.