A GNA feature by Samira Larbie
Accra, May 10, GNA – Baby Deborah (not her real name) was the kind of child people could not ignore. She had a radiant smile, a laugh that filled every room, and a playful charm that drew people in effortlessly.
When she began nursery school at just 18 months, she quickly became a favorite among teachers and classmates. She was lively, eager to participate, and carried a brightness that made her presence unforgettable.
But beneath that joy, something was not quite right.
While other children babbled, mimicked sounds, and followed simple instructions, Baby Deborah struggled. Words would not come. She found it difficult to repeat sounds, point at objects, or engage in basic learning activities like scribbling.
At first, no one panicked. “Children develop at different paces,” her teachers reassured themselves.
But time told a different story.
At age two, then three, then four, the developmental gap widened. Yet her laughter remained, masking the underlying challenges. Because she appeared happy and socially engaged in her own way, her delays were quietly overlooked.
By age six, her silence had become normalised in the classroom.
A Mother’s Search for Answers
At home, however, her mother, Madam Deborah Dzakpasu, refused to accept uncertainty.
A single parent with limited resources but unwavering determination, she moved from one facility to another seeking answers. Each inconclusive visit deepened both her concern and resolve.
Finally, at age eight, just as Baby Deborah was preparing to enter Class Three, the diagnosis came: autism.
It brought clarity, but not relief.
“Instead of opening doors, it felt like everything was suddenly closing,” Madam Dzakpasu recalled.
Schools that had once welcomed her daughter began to hesitate. Some declined admission altogether, citing the lack of capacity to support her needs.
Her education came to an abrupt halt.
Now 18 years old, ‘Baby Deborah’ remained at home, out of school; her early promise interrupted by years of delayed intervention and systemic gaps.
To care for her daughter full-time and protect her from potential harm, Madam Dzakpasu made a painful sacrifice: she left her job.
“I had to choose between work and my child’s safety,” she said. “But we cannot do this alone. Government’s support would make a great difference for parents like me.”
Today, they depend largely on support from non-governmental organisations and the generosity of individuals.
Understanding Autism and the Cost of Delay
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that affects communication, behavior, and social interaction.
It is described as a “spectrum” because it presents differently in each individual.
According to the World Health Organisation, approximately one in 100 children globally is diagnosed with autism.
In Ghana, however, there is no comprehensive national data, and experts believe cases are significantly underreported due to stigma, low awareness, and limited diagnostic services.
Early signs often appear within the first two years of life. In some cases, children who develop typically may begin to lose previously acquired skills between 18 and 24 months.
While there is no cure, research consistently shows that early intervention, especially during preschool years, can dramatically improve communication, independence, and quality of life.
For Baby Deborah, that window was missed.
Everything Starts with the Parents
At the forefront of autism advocacy in Ghana is Mrs Thara Brigitte Mills Simmonds, the Chief Executive Officer of the Mulan Neurodiversity School.
Speaking during an outreach programme organised in collaboration with the National Assessment and Resource Centre, she emphasised the critical role of early action.
“Having an autistic child does not mean the end of the child’s future,” she said. “It means we must look for the right support systems. And everything starts with the parents.”
The outreach brought together speech and language therapists, occupational therapists, behavioral technicians, and special educators to provide screenings and guidance.
Parents were encouraged to move beyond denial and seek professional support early.
A System Under Strain
Hajia Ramatu Alhassan, the Head of the Institutional and Resource Centre at the National Assessment Centre, highlighted that autism was just one of many developmental and learning challenges affecting children.
The Centre also manages cases involving: Intellectual disabilities, Cerebral palsy, Hearing and visual impairments, Speech and language delays, Learning disorders such as dyslexia, dyscalculia, dysgraphia, and aphasia.
Despite its critical role, the Centre faces severe limitations.
“We don’t have enough specialists—no psychiatrists, no ENT specialists, no optometrists,” she said. “We are forced to refer many cases elsewhere.”
Infrastructure gaps and resource constraints further hinder access to timely support.
The Inclusion Gap
A major issue raised by stakeholders is the exclusion of children with special needs from mainstream education.
Mrs Simmonds described the practice as both discriminatory and socially damaging.
“What kind of empathy are we teaching other children when we turn special needs children away?” she asked.
Mr Kingsley Boachie, Senior Research Officer and Inclusive Education Officer at the Pre-Tertiary, Ministry of Education, acknowledged the challenge but pointed to ongoing reforms, including deployment of trained special education teachers to the various schools, development of model inclusive schools, and investment in infrastructure and learning resources.
“Education is a social good,” he said. “We cannot leave anybody behind.”
The Hidden Barrier: Denial
For many professionals, the biggest barrier is not just infrastructure – but mindset.
Mr Percy Daniel Okyere, Therapist and Head of Department at the Mulan Neurodiversity School, described parental denial as a critical setback.
“You cannot work on what you have not accepted,” he said. “Acceptance is the foundation for helping every child to reach their potential.”
He emphasized that early intervention should focus on Identifying strengths, Building communication skills Encouraging independence, and Exploring vocational pathways early.
“It is better to raise a supported child today than struggle with a dependent adult tomorrow,” he added.
From Policy to Reality
Ghana has made policy commitments through frameworks such as the Inclusive Education Policy (2015) and the Persons with Disability Act (2006). However, implementation gaps remain significant.
Mrs Simmonds called for urgent action to support children with special needs.
“Children with disability must be visible—not just in policy documents, but in budgets, infrastructure, and real systems,” he said.
A Story Beyond One Child
Baby Deborah’s story is not an isolated case. It reflects a broader national challenge, where delayed diagnosis, limited resources, and social stigma combine to push vulnerable children out of the system.
Her journey is a reminder that awareness alone is not enough but must lead to early detection, to support and It must lead to inclusion.
Because sometimes, the difference between a child thriving and a child being left behind is simply this, Someone noticing early enough…and choosing to act.
A Story Beyond One Child
Baby Deborah’s story is not an isolated case. It reflects a broader national challenge, where delayed diagnosis, limited resources, and social stigma combine to push vulnerable children out of the system.
Her journey is a reminder that awareness alone is not enough. It must lead to early detection, timely support, and genuine inclusion.
This is because sometimes, the difference between a child thriving and a child being left behind is simply this: someone noticing early enough and choosing to act.
Conclusion
Ultimately, Baby Deborah’s story underscores a painful reality facing many families in Ghana: that delayed diagnosis, stigma, and inadequate support systems continue to deny children with autism the opportunity to reach their full potential.
Yet, it also highlights the power of early intervention, acceptance, and inclusive education in transforming lives.
As stakeholders call for stronger policies, better resources, and greater public awareness, one message remains clear: every child, regardless of ability, deserves the chance to learn, grow, and thrive in a society that sees, supports, and includes them.
GNA
Edited by Agnes Boye-Doe
Reporter: Samira Larbie