Autism Awareness: One parent’s journey to help son thrive

Autism, or Autism Spectrum Disorder (ASD), is a neurodevelopmental condition characterised by persistent challenges in social communication and interaction, along with restricted or repetitive behaviour, interests, or activities. It’s a spectrum, meaning the way it manifests varies greatly from person to person.

On World Autism Awareness Day 2025, I have had to reflect on my journey as a parent to an autistic boy child named Marcelino Ategeka, now seven years.

What were your initial thoughts and feelings when you first learnt about your child’s autism diagnosis?

At first, it was denial. Nothing of the sort had ever been heard of in our circles. As I dug through our family history, trying to make sense of it all, I found nothing close to what we were beginning to suspect. But then we slowly began connecting the dots, tracing back to our son’s behaviour since birth.

There are certain developmental milestones every baby is expected to hit at specific ages, and mothers, in particular, know each and every step of their child’s growth, ticking off the days, months, and years like clockwork. But Mercelino was different. By the age of four, he still could not express himself. He could not talk or form short phrases.

He was extremely shy, avoided eye contact, preferred to be alone, was restless, aggressive, and easily irritated by noise. A backbencher of sorts, always in his own world. Still, his mother, Harriet Nanono, and I, clung to denial. We waited. We sought advice from elders. We even tried a few traditional remedies, such as having him eat from a bird’s nest. Yes, those age-old African traditions that are believed to work for children with delayed speech. While there is no scientific evidence proving that eating from a bird’s nest can correct speech issues, some cultures believe it helps improve voice and overall health. We were desperate for a solution..

What are some of the most significant challenges you have faced as a parent to an autistic child and how have you navigated them?

Not many will understand or appreciate your child’s behaviour. You see, when you have a boy who is restless, always on the move, never ready to sit still or focus on one thing like his peers, his constant pickiness can easily become frustrating. There is always that worry; what will he do when you are not around? You feel the stares from other parents, the silent judgment, perhaps thinking he is ill-mannered, or that he has been over-pampered.

At times, we even dreaded travelling with him, constantly wondering how we would manage to keep him in check. Those were truly depressing thoughts, if I am being honest. To deny a child the freedom others enjoy simply because we feared he might disturb others? That fear became our biggest motivation, to face the situation head-on and take control, no matter how hard it was.

Can you help shed light on the lesser-known challenges faced by parents of children with autism, particularly when it comes to raising awareness and understanding among others?

One of the biggest hurdles for parents of children with autism is creating awareness and understanding within their immediate circles, especially among siblings. Sibling awareness is paramount, as it lays the foundation for acceptance and inclusion at home. Take the example of Ategeka, whose sister is 12 years old. She is exceptionally bright and highly competitive.

Early on, she would often pressure her brother to keep up with her pace, academically and socially. This constant comparison frustrated him, and he gradually withdrew, losing confidence even in associating with her. Ironically, she is also his comfort and protector whenever they are away from home or visiting new places.

To help bridge this gap, we ensured that his sister attended all therapy sessions with us. This helped her understand and appreciate that her brother processes the world differently. It taught her that supporting him requires patience and sensitivity, not competition. We also faced challenges beyond the nuclear family.

One such instance was with Ategeka’s younger cousin, who made fun of his inability to speak. His mother reacted harshly, giving the boy a beating to discipline him. While I personally would not have chosen physical punishment, his behaviour stemmed from ignorance, not malice.

I also acknowledge that in some cases, not ‘sparing the rod’ may compel siblings or peers to reflect more seriously on their actions and gain a better understanding of autism. Another major hurdle we have overcome over the last seven years is finding a house help who understands and empathises with our son’s condition.

This may seem like a small thing, but in today’s world, finding a domestic worker with the emotional intelligence to care for a child with special needs is an immense challenge. We consider ourselves fortunate to have found someone who not only cares deeply for Ategeka but is also recognised and appreciated by him. Her presence has been a blessing in our parenting journey.

These are just a few of the lesser-known, but deeply personal, struggles that parents of children with autism face, especially in trying to build a circle of understanding and support around their children. True awareness begins at home, and with every informed sibling, relative, and caregiver, the path becomes a little less lonely for both the child and their parents.

Were you influenced by stigma and shame when coming to terms with your child’s autism diagnosis?

You cannot be ashamed of your very own child. Besides, my son is not on a spectrum that is particularly worrying. Growing up, I used to love reading and reflecting on a quote that hung in my parents’ living room: “I used to cry because I had no shoes, until I met someone with no feet.” That message shaped the way I approach challenges in life.

The moment we started acknowledging the diagnosis and learning more, through interactions with teachers, therapists, doctors, and other parents, we realised that there is absolutely no place for shame when it comes to your own blood. The school that my son attends, The Dawn Centre in Bukoto,Kampala, has also helped us a great deal.

What advice would you give other parents raising autistic children?

Be patient and positive

Maintaining a positive attitude can help children with autism feel more comfortable and confident. Celebrate small successes, praise them for their behaviours, find ways to reward them and recognise that progress may take time.

Seek support

Connect with other parents, caregivers, and family members for shared experiences, advice and emotional support. Join a support group which will help you meet other parents dealing with similar challenges. Also, ask for help whenever needed.

Establish a routine

Consistent routines can reduce anxiety and help your child feel more secure. It will also make new skills and behaviors easier.

Encourage social skills

Find opportunities for your child to engage with peers in different environments. Take your child along for everyday activities. It may help them get used to the world around them.

Take your time

While determining what works best for your child, you will probably encounter various techniques, treatments, and approaches. Take your time and stay positive during the process. Do not feel disheartened if a specific approach does not yield the desired results.