The IFA Capacity Building for Parents and Caregivers of kids with autism is a special programme designed to increase understanding and acceptance of persons living with autism; increase early childhood screening and intervention, raise autism awareness, and ensure access to reliable information and services for children with autism. It is a practical training programme to foster the social and communication skills of parents and caregivers providing services to children with autism and other developmental challenges. Also targeted at training capacity building for special needs teachers to effectively impart knowledge to children with autism and other developmental disabilities and make them available to access knowledge. The programme seeks to empower 50 parents who have children on the autism spectrum with coping mechanisms by leveraging on the existing IFA Parents Support Network to identify such parents that are in need. The programme also serves in uniting parents to advocate for the rights of their children to basic education and healthcare. In addition,50 special needs teachers are trained to enhance their capacity for handling children with autism and other neuro-developmental disorders.

In Nigeria, autism is hardly understood and catered for, those who live with autism and their caregivers hence face great difficulty and intolerance. This results from a lack of information and knowledge as well as the preponderance of poverty that makes living with autism even worse.  The autistic community in suffers institutionalised neglect, discrimination and outright persecution. Addressing challenges linked to autism in Africa in general and Nigeria specifically calls for a multi-faceted non-linear approach. 

The Ike Foundation for Autism (IFA) is a non-profit NGO established in 2008 with the vision to eliminate stigma associated with autism while providing services. The IFA mission is to enable all persons living within the Autism Spectrum Disorders (ASD) to achieve their full potential and lead productive lives.  

IFA works families like the Aikpos who are trying to repair their marriage while raising an autistic teenager, and Mrs. Rafat a single mother who splits her time between her journalism career, and reading about, “why teenage boys get morning erections” so that when her teenage autistic son wakes her up to show her his phallic phenomenon that he does not understand she can try to explain to him.  IFA wants to help Mr James who not only cannot afford therapy for his young son, but is so desperate that he absconds with the motorcycle that was bequeathed to him to transport his child to receive therapy for free. It wants to get through to Mrs Williams, who is in denial about her child’s developmental challenges and to help her accept the fact of her child’s special needs and come to terms with the situation. 

David’s mother went to the police station to report that her son was missing. Instead of the needed assistance this mother of three (one of whom is autistic) expected to receive, she was threatened with arrest because the officers in charge did not understand her plight when she explained how she, overwhelmed as she was, lost track of her hyper active autistic son. To compound her experience with the police is the fact that when she got home, she was having to deal with the disapproving husband who day by day is getting increasingly frustrated by the demands of raising an autistic child. He is not abusive- but only barely so and David’s mom has had to master the art of walking on eggshells around a disappointed husband and father. She has to deal with all these issues in the face of the economic constraints and the challenges it begets.  David’s mother admits that she sometimes harbours thoughts of focusing her limited financial resources on her other neuro-typical kids who have a higher potential to provide some return on her investment. Despite these moments of weakness, David’s mom is completely devoted to her child would not trade him for any other child. 

Across Nigeria and Africa, there are people like these mentioned above; affected by autism, rejected by society, neglected by family, feeling lost and despondent. They are the people IFA call family and friends. They are the ones IFA wants to walk this life with, hand in hand, teaching them there are people who care and there is hope.The project focused on different sectors of the community, providing sensitization about autism, teaching parents about symptoms, teaching teachers and secondary caregivers about the latest methodologies in providing care, engaging with medical professionals to set up mechanisms to promote assessment and diagnosis and ultimately, preaching the gospel of empathy to people living with autism and their families. 

People like David’s dad, the Aikpos and Mrs. Salami came together during these meetings to learn and share their unique stories. They connected with people who are on similar journeys with them and formed a pseudo-family to provide support for themselves. IFA realized that the dearth of information about autism in Africa is a leading cause of the unfortunate situation in Africa. For that reason, IFA embarked on a content creation driven strategy that seeks to make available, as much information as possible to the right people using the right language and medium of dissemination. This included the creation of Kene animated series which premiered on Youtube. This content showcases the unique autism situation in Africa using the titular character of Kene as a nexus point. Other original content such as this in different formats are also currently in development. IFA also revamped its website to make it more intuitive and user friendly to make information accessible to the public. 

When dealing with issues around autism, empathy is key. The project learned that empathy should guide its actions when dealing with people who have been affected by autism. Mrs Ladipo, a rightsholder described how a little kindness dissuaded her from abandoning her 10-year autistic daughter. According to her, it took a stranger telling her she had a beautiful daughter even while the child was in the middle of a temper tantrum. The gospel of empathy over prejudice was amplified when the project engaged with secondary caregivers like teachers, health professionals etc. It is an extremely difficult life dealing with autism, and a little sincere love is an oasis in the desert that is living with autism in Africa. 

 The project also learned that dealing with autism situations requires a non-linear approach in disseminating information about autism in Africa owing to the constantly shifting dimensions of ethnicity, culture, language and ethos.  For this, a detailed communication strategy is required when the objective is to carry information to the largest possible mass of people.