Beyond the Autism Stigma: Parents with autistic children give their experience

Some believe autism is caused by ancestral curses, spiritual punishments, or poor parenting, while others assume that autistic individuals cannot lead fulfilling lives.

These myths not only create stigma but also prevent families from seeking the right support and interventions.

Autism is not an illness. Autism spectrum disorder is described as a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. It is described as a “developmental disorder” because symptoms generally appear in the first two years of life.

Bula, the son of Bella Nicholson appeared normal at birth, but his milestones were delayed. 

He was slow to start walking and had only a few words by the time he reached 3 years old. Bula showed great interest in machines from his earliest years, be it vehicle engines under repair or mowing machines and water pumps working.

“Although it was clear to us that Bula was different, it took time to realize that his condition is autism. Doctors did not guess the issue, so the revelation came through a parent mentioning autism in regards to Bula when he was 3 years old. After reading about autism on the internet, I was sure,” says Bella.

When Bula was 5 years old, he was taken for a formal assessment which confirmed a diagnosis of autism. 

An Autism diagnosis, says Bella, is quite overwhelming because you read “lifelong’’, “no cure”, “unknown cause” “profound difficulties in social interactions and behavior”, “distress and self-injury”, “may never speak”, “may need lifelong care” but on the other hand, a diagnosis is a relief because you start to understand how your child is different. 

“Real people out there are swearing their child was ‘cured’, some even encouraged me to go for miracle rallies and that made me to try some crazy, time consuming and expensive things for my child’s sake. I am grateful that a down to earth husband and a limited budget stopped me from trying more!” added Bella. 

Apart from Bula being an autistic individual, he also possesses innate creativity. Art is his sanctuary, a way to express emotions words cannot capture. He creates stunning artwork and plays piano with surprising skill, all without formal training.

Bula’s mum urges parents to provide their autistic children with access to free-form artistic expression in a judgment-free space.

Bula’s story is powerful, but he is not alone. Across communities, countless families navigate similar paths. 

Sylvia Akinyi, a 48-year-old mother has an autistic child named Brian.

From the moment Brian was born, his mother knew he was different. He did not respond to his name, avoided eye contact, and would cry uncontrollably over the smallest changes in routine. Unlike other children, he never spoke, and instead of playing with his peers, he would spin objects for hours.

“Having an autistic son made my heart heavy, it isn’t something I was prepared for. Many told me that Brian is bewitched, some elders in my community said I angered ancestors and asked me to go to a prophet for deliverance,” says Sylvia.

At first, Sylvia believed what the elders told her. She followed every piece of advice given to her: bathing Brian in special herbs, taking him to a preacher who prayed fervently over him, even having a traditional healer perform a ritual to “chase away the spirits.” But nothing changed.

“The was so much stigma, even in church, some parents never wanted their children to move close to my son. I could hear people whispering ‘generational curses.”

Everything changed when Sylvia found a support group of parents who also had children with autism. For the first time, she felt like she belonged.  Slowly, she learned how to support Brian and embraced his differences instead of trying to change him.

Dr. David Bulimo, a Clinical psychologist at Busia County referral hospital, has seen firsthand the challenges families face, both in understanding the condition and in navigating the myths and misconceptions surrounding it.

He says autism is a neurodevelopmental condition. It is not caused by anything the parents did wrong or by some supernatural force.

“Autism disorder is a developmental disorder that affects how a person communicates, interacts with others, and experiences the world. Some individuals with autism may have significant learning disabilities, while others may have average or above-average intelligence. The signs of autism can typically be recognized in early childhood, with most children showing symptoms by the age of 2 or 3,” says Dr. Bulimo.

He also emphasizes that autism is not a mental illness but a developmental disorder. It involves differences in the brain’s structure and function which impacts how an individual interacts socially, how they process information, and how they respond to their environment.

“Autism is a genetic condition, and in some cases, environmental factors may contribute, but it is not due to anything 'evil' or 'wrong.”

Many people think that individuals with autism cannot lead fulfilling lives. 

 “It’s important to recognize that with early intervention and appropriate therapies, children with autism can develop crucial skills like communication, social interaction, and independence. Moreover, support and love from family members can make a huge difference in a child’s development.”

Dr. Bulimo emphasizes that there is a need to challenge the stigma around autism and to create an environment where parents feel empowered to seek help.

He encourages schools and communities to adopt inclusive practices that will allow children with autism to get the same opportunities for education and social participation just like other children.