An Autism Support Centre, 2019: A project Proposal
(Kamengo, Mpigi District)
Project Budget: US$ 471,091;
Requested Funding: US$ 417,387
Local contribution (SCAU): US$53,704
As a response to widespread and lingering concerns on the mystery, stigma, neglect and misery associated with Autism in Uganda, Save Children with Autism Uganda (SCAU) seeks to act more efficaciously. For this purpose we seek to establish an Autism Support Centre (ASC) for specialised autism therapy and learning in Central Uganda, one of the constituent geographical regions in the country. Uganda is divided in four regions including the Northern Region, Eastern Region, and Western Region beside the Central Region (see Figure 1)
So far, as SCAU, we have conducted needs assessment surveys on the plight of the autistic and affected families in Uganda but more particularly in the central region. We have also carried out community mobilisation for awareness on Autism in the region (See Gallery). Autism is also formally referred to as Autism Spectrum Disorders (ASD). Our targets are a huge responsibility but saving children with Autism will efficaciously make a fundamental step forward if the proposed ASC will be successfully established in the region earmarked (see Figure 2).
For now SCAU identifies Kamengo in Mpigi District as the project site in Central Uganda. In future, similar project centres can be established in rest of the regions. Though there isn’t enough research, ASD prevalence in Central Uganda is epic there are 106,749 persons living with autism.
Why support children with autism?
The joy of parents of a child with ASD is to see their child healthy, accepted and respected. This joy is underscored in Uganda’s National Policy on Disability. Nonetheless, results of the needs assessment survey we conducted on Autism in Central Uganda show the contrary. The survey reveals that the health effects of autism and severity of its symptoms were different in each person. However, one thing stood out commonly in communities we visited as SCAU; there was still hurtful desperation, social regret and stigma against the ASD child.
According to SCAU (2016), mothers with an undiagnosed autistic child have changed religions and/or resorted to ‘witchcraft’. They have been abandoned by husbands, and endured the burden of single mothers. Even a mother could abandon such a strange child! All this happened because parents wrongly believed their children were possessed by demons. One of the painful experiences is the episode Antonnate Nyangoma and her Autistic daughter Drusilla Mbabazi endured.
Born in 2005, Drusilla couldn’t communicate even at age 3 years. Before diagnosis and formal autism support in 2010, the duo was abandoned by the child’s father, and Nyangoma did the imaginable in pursuit of cure. She converted to Islam, changed to Pentecost, sought charismatic catholic intervention, dozed in Mountains and slept Drusilla in noisy crickets and insects, some of which she fed her. Such experiences deprive parents and children of family joy, especially when ASD is not understood, and not enough intervention is provided like it is widely witnessed especially in rural Uganda, the central region inclusive. That is why Autism support is essential as the basis of evidence-based interventions.
Why the proposed Autism Support Centre?
Nyangoma’s episode of desperation and many similar examples are an alarming call, a call that makes the proposed ASC very ideal. In Uganda, evidence based intervention introduced to improve the lives of the autistic is still young and not enough even in the central region where a few private charities have tried to do commendable work. Central Uganda attracts the most attention perhaps due to its urban advantage and ASD prevalence. It has the highest prevalence rate, at 27% of the national stats. Of the 22 districts in the region, 04 form Kampala metropolitan (Figure 2), the only capital city conurbation in Uganda. There are over 10 of such NGOs concentrated in Kampala metropolitan (names withheld for ethical reasons).
Despite such noble private initiative, formal autism support so far covers only 25% of autistic children in the region. There is also no organisation with a kind of comprehensive autism support centre (ASC) SCAU seeks to set up at Kamengo. Neither has government provided one. Besides, there is no government support for specialized education and therapy for autistic children in mainstream schools. This leaves an operational gap SCAU was prompted to reduce. This means, ASC will be a redeemer once completed. It will provide the much desired services. It will host public autism awareness and capacity building programs.
As a result, SCAU will through the centre, formally mobilise families of suspected autistic children, recruit, rehabilitate, treat and train the affected child. Specifically, the centre will provide child assessment and counselling, behavioural management, skills development as well as special needs education. The centre will propel empowerment and inclusion of children diagnosed with ASD.