In Uganda, the level of autism awareness is pathetically low. Efforts to increase public awareness of and sensitivity towards autism from the grassroots levels are urgently needed. It is our hope that community knowledge and understanding will follow.
Our government does not yet recognize autism as an independent disability. As a result, there is no government funding for educational and specialized services for autistic children in mainstream schools. This places the financial burden of autism entirely on parents.
Entebbe Action on Autism Organization is a registered, community-based organization in Uganda (Africa). Our mission is to advocate for autistic persons’ equal rights and equal opportunities for meaningful inclusion within the community. Our primary goal is to enable autistic individuals to lead better, more independent lives. Currently, our organization is the only group in the Entebbe area solely for autistic persons.
We strive to fulfill our mission by educating the community and raising general awareness about autism to improve public perceptions of autism. We carry out various community activities aimed at reducing the dehumanization and public stigmatization of autistic persons.
We attempt to influence functional, inclusive service delivery by advocating for the involvement of autistic persons in development and empowerment programs. We monitor and advocate for the implementation of policy benefitting individuals with autism. We advocate for functional, inclusive education at all levels.
In general, there is an overall lack of training and expertise in ASD amongst doctors, teachers, and therapists. We advocate for the availability and accessibility of beneficial therapies in local area hospitals.
Because professional services here are poorly resourced, parents of children with ASD in Uganda rely on informal sources of support services. Our organization has examined the potential of providing education and training to parents as a means of promoting child development and found that it appears to be cost effective. We educate parents about ASD, its impact on them as caretakers, available therapies, and possible home-based interventions that can help to improve their children’s welfare.
We encourage and support self-advocacy among autistic persons and parents of autistic children by building their capacity to become self-advocates within their community settings. Our work in this area is led by the slogan, “By us, not for us.” In such forums, parents have opportunities to share skills and knowledge between and amongst themselves and to gain strength regarding how to look after their children. We value these as vital empowerment tools as well.
We strive to support parents of children with ASD financially through income-generating projects. We know that parental well-being, particularly maternal well-being, can greatly influence the well-being of children. Most of the parents that we work with are single mothers.
We offer counseling services to autistic persons, to parents of children with spectrum disorders, and to autistic married couples or those in relationships that involve an autistic person. Our goal is to keep couples together as much as possible and to highlight the benefits of staying together, such as two-person income potential and reduced stress, amongst other things.
We look for opportunities that may enable an autistic person to acquire useful skills so that s/he can live life to the fullest potential. With appropriate support, individuals with autism can demonstrate amazing progress in their productive abilities, life skills, independence, and behaviors, increasing their future employment opportunities.
We advocate for the provision of employment opportunities in the formal and non-formal sectors of the job market. While we continuously advocate for non-segregated employment, we also look for avenues to help an autistic person utilize the skills required to earn a living. The goal is future independence and economic empowerment.
In all of our endeavors, we are grateful for the partnerships that we have developed with the local authorities, our supporters, and volunteers. Over time, we hope to strengthen our network and foster collaboration with different stakeholders. As mentioned earlier, in Uganda, there are no specific government programs that support individuals with autism and there are very few non-governmental organizations for autism. Therefore we welcome partnerships, working relationships, collaboration with and support from international organizations aimed at improving the lives and well-being of autistic persons.
Chairperson, Fundraising Committee
Entebbe Action on Autism Organization
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.