Navigating Autism: How parents can be supported in their journey.

For Faith Mwende, 27, her son was not born autistic, at least, that is what she believed, until the baby was 11 months old. By then, however, it was too late.

Faith’s son, Mwangi, is now three years old, yet he is unable to walk, talk, stand, run around, or even eat on his own.

His condition is further complicated by spasticity, a neurological condition that causes stiff muscles and difficulty in movement.

Like many parents raising children with autism, Faith faced confusion, stigma, and a lack of resources to help her navigate her son’s condition.

"I didn’t know what was happening. I kept waiting for him to hit his milestones, but they never came. At first, I thought he was just a late bloomer, but deep down, I knew something was wrong," she says.

Faith took her son to a local clinic, but the doctors assured her that "boys tend to develop slower than girls" and advised her to be patient.

However, as months went by, Mwangi still wasn’t speaking or walking. It wasn’t until she visited a specialist in Nairobi that she received the shocking news.

"The doctor told me, ‘Your child is autistic and spastic.’ I had never heard of autism or spasticity before. I kept asking myself, what did I do wrong? Was it something I ate during pregnancy? Was it a curse? I had no answers," she recalls.

The Importance of early diagnosis and intervention

Many parents struggle with delayed autism diagnosis, which prevents them from accessing crucial therapies. Experts recommend that parents pay close attention to early signs such as:

·         Delayed speech or lack of communication

·         Limited eye contact or response to their name

·         Unusual repetitive movements or fixations

·         Difficulty interacting or engaging with others

·         Muscle stiffness or difficulty moving (spasticity)

Dr. Naomi Kiragu, a pediatric neurologist, emphasizes that early intervention is key.

"If autism and spasticity are detected early, a child can receive therapies that significantly improve their ability to communicate and move. The brain is still developing, so the earlier we start, the better the outcome," she explains.

She urges parents to seek specialist evaluations if they notice developmental delays instead of waiting for their child to "grow out of it."

The emotional toll on parents

Beyond medical concerns, raising an autistic and spastic child is emotionally draining.

Many parents experience guilt, depression, and frustration.

"I used to cry every night. I kept asking, ‘Why me? Why my son?’ The hardest part was people telling me that my child was bewitched or that I must have done something wrong," Faith shares.

According to Dr. Lydia Njeri, a psychologist specializing in neurodevelopmental disorders, parents need mental health support just as much as their children need therapy.

"Many parents blame themselves, but autism and spasticity are not anyone’s fault. Counseling can help parents accept their child’s condition and learn how to support them effectively," she says.

Faith eventually found a support group for parents of autistic children, which changed her outlook.

"When I met other parents going through the same struggle, I realized I wasn’t alone. We shared stories, advie, and encouraged each other," she says.

The financial struggles of autism care

One of the biggest challenges parents face is the high cost of therapy and special education.

"Therapy is expensive. A single session of speech therapy costs Ksh 3,000, and my son needs at least three sessions a week. For physiotherapy to help with his muscle stiffness, I pay even more. That’s almost Ksh 50,000 a month, not counting other medical bills," Faith says.

Dr. Kiragu notes that the government and insurance companies need to step in to provide subsidies and coverage for autism-related care.

"Many parents cannot afford specialized care, meaning their children miss out on crucial therapies. We need policies that ensure every autistic and spastic child can access quality intervention, regardless of financial status," she says.

How society can help

Faith urges society to be more understanding of children with autism and spasticity.

"People stare at my son when we’re in public. Some whisper and point at him. Others tell me to pray harder. But autism is not a punishment; it’s a condition that needs understanding," she says.

She calls on schools, workplaces, and communities to be more inclusive and educate themselves about neurodevelopmental disorders.

"These children deserve love, care, and a chance to thrive. We can all play a role in making life easier for them and their parents," she adds.

As awareness grows and more parents share their experiences, there is hope that autism and spasticity will be better understood and supported in Kenya.