The Caleb Centre - End of Year Update

The Caleb Centre for Autism is a national first in the country of Zambia. Since opening in 2016, The Caleb Centre has relied solely on volunteers and donations to support children with Autistic Spectrum Disorder in a country with little to no capacity to support children or adults with special needs.

Across the continent of Africa, the suggested rate of autism is 1 in 100 however, the true figure is unknown and is expected to be higher. It is difficult to gain a true indication of the prevalence of autism in any African nation due to various factors including: lack of awareness, lack of medical diagnostic expertise, inability to access specialist medical attention for accurate diagnosis and sadly, family members can be hidden away or abandoned for being “mad”.

The assessment and diagnosis of autism is complex and is usually conducted by a qualified specialist, such as a paediatrician or via a comprehensive assessment performed by a team of specialists.

Even in first world countries, the lack of understanding of autism can be a barrier for people to have their condition recognised and adequately supported. Sadly, in our African context there is a significant absence of awareness, acceptance and tolerance for people with autism. It is not uncommon for children with autism to be labelled as naughty or demon possessed. Consequently, these vulnerable people are subject to counterproductive beatings and ‘deliverance’ rituals. Those affected by autism and their families are at risk of being isolated and this has wider social and economic implications.

In September 2016, Nellie Luulu followed her instincts as a mother to Caleb and pursued medical diagnosis for his condition. Caleb was diagnosed as having autism spectrum disorder. Following Caleb’s autism diagnosis, Nellie soon discovered that there was no information, resources, education programs or community awareness to help her understand or support her son’s condition.

Autism Spectrum Disorder, commonly known as ASD, affects how people communicate and interact with others and how they make sense of the world.

Research indicates early diagnosis of autism and intervention make a positive difference for a person’s overall development and well-being. Targeted intervention and support for a child with autism, and their family, also determine their quality of life in adulthood. Specialised care, education and support provides a child with autism with higher likelihood to acquire social skills and react with better understanding in emotionally challenging situations.

Integrated training and management approaches include parents/carers, focussing on improving understanding of autism and the opportunity to develop the skills needed to care for their child with autism. These integrated approaches also reduce the burden of care that families can experience, due to their limited knowledge about autism and supportive skills.

Autism is a developmental condition is typically life-long.

In the absence of community awareness, acceptance or any notion of inclusion for children with autism, Nellie began her journey as an Autism Awareness advocate sourcing information, resource and support and opened The Caleb Centre for Autism in September 2016. TTN Ministries willingly joined Nellie in her mission to resource a local facility where other children diagnosed with autism, and their families, could receive information and support.

Children with autism grow up to be adults with autism.

Increased understanding of autism and awareness is vital! Autism may go undetected depending on the severity of behaviours, the inability to interact socially, to communicate, and to manage sensory sensitivities.

Currently, The Caleb Centre for Autism operates as an educational facility in rented premises on Kabwe Mine Road. The centre’s key focus is education and supporting the children to develop foundational social and communication skills. The Caleb Centre currently supports 17 children who regularly attend ‘school’ and each of them are unique in their abilities and have received diagnoses along various stages of the autistic spectrum. Children who attend The Caleb Centre are unable to attend or learn in a typical school environment, as the centre supports a range of autistic abilities, including those who are non-verbal to others with social difficulties.

The Caleb Centre for Autism has survived since 2016 through donations, volunteer assistance and a generous landlord accepting minimal rent. Our program and staff manage to survive on past fundraising donations to barely provide the basics of support for the children at the centre. A mother’s heart and humble beginnings of necessity to support her son, have been realised as a centre that now provides an opportunity for learning and support, positively impacting the lives of over 17 children and their families.

Statistically, it is widely accepted that 1 in 100 people will experience life somewhere on the autism spectrum. In a city like Kabwe, that equates to approximately 2000 people living with autism and 1000 of those would be children. The first step is to increase understanding and awareness of autism in the wider community. Children with autism grow up to be adults with autism. Understanding and targeted resources and support are needed to enable those with autism to interact socially, communicate and manage their world.

People with ASD experience difficulties with communication, social interaction, restricted and/or repetitive interests and behaviours. These are often accompanied by sensory issues, such as oversensitivity or under-sensitivity to sounds, smells or touch.

Neurological disorders can affect anyone from any social or economic background or culture. Every week there are families who, like Nellie in 2016, are hearing the diagnosis – your child has autism. Like Nellie, their biggest question…what now?

The challenge ahead is considerable, but not insurmountable. The reality is that Nellie’s what now? solution to an overwhelming problem – The Caleb Centre for Autism – has become an essential service in the Kabwe community. What began as a mother’s mission to support her son, has grown into a small school for 17 children with special needs. However, The Caleb Centre cannot continue to exist just as a small school – it must transition into an integrated centre offering targeted support for a wider range of neurological disorders offering an integrated management and intervention approach through applied behavioural learning programs.

Did you know?

Autism is often diagnosed alongside other conditions:

Classical medical problems – such as epilepsy, gastrointestinal issues or sleep disorders;
Developmental diagnoses, such as intellectual disability or language delay;
Mental-health conditions, such as attention deficit hyperactivity disorder, obsessive-compulsive disorder or depression;
Genetic conditions, including fragile X syndrome and tuberous sclerosis complex.

On a global scale raising awareness has been the key to increasing community support, understanding, research and funding. As a centre we actively advocate and participate in awareness programs and opportunities in our local community.

Today we are seeking your financial assistance

Already, the Caleb Centre is a vital service where families are able to connect through a shared sense of community. Through the empathetic support of other families living with this shared experience, the weight of the challenge is somehow eased. Collectively we have become one voice petitioning all stakeholders to educate the community and raise awareness for autism.

As a management team we have the strategic plans that act as our road map for growth and development. The foundations of commitment, dedication and hard work that birthed The Caleb Centre for Autism will be deployed to unite all stakeholders to raise awareness for Autism throughout our community and beyond to our nation and our continent.

For those of us who have joined Nellie failure is not an option’ as the productive lives of many children, who need to grow into successful adults, are at stake. Our task ahead is big and our aim to be leaders and educators of a nation, requires a big solution. We hope and pray that our efforts will lead to earlier diagnosis, access to effective interventions and more meaningful supports to help children on the spectrum reach their full potential in a positive, caring environment.

We acknowledge that increased financial support through donations is our only hope to realise this vision. We need to move from weekly survival to a fully operational specialised education facility. Ongoing financial support will facilitate upgrades in managerial and financial accountabilities in line with donor expectations. We are seeking partnerships The Caleb Centre for Autism through monthly sponsorship options.

Now is the time for The Caleb Centre for Autism to transition into a fully functional integrated care facility where children can access the intervention and resources they need to learn through applied behavioural techniques and where families can access the resources to provide ongoing care and support.

Our Vision: to become the leading voice for autism in our nation.

Raise awareness and understanding of autism
Provision of targeted education support through applied behavioural learning principles
Increase accessibility to medical diagnosis assessments and available treatments
Reduce mental and emotional stress for families living with and caring for those with autism through strong community connections
Lobby government for funding and policy changes to support the ongoing needs of people living with neurological disorders

Our Mission: Ignite positive change for people living with autism, in and beyond our community.