The Centre for Autism Research in Africa (CARA) is an interdisciplinary clinical research programme based in the Division of Child & Adolescent Psychiatry at the University of Cape Town in South Africa.
Almost everything we know about autism spectrum disorders (ASD) comes from research in high-income countries like in Europe, the UK or the USA. However, the majority of people with autism spectrum disorders live in low- and middle-income countries such as in Africa. The Centre for Autism Research in Africa (CARA) was founded to reduce this ‘knowledge gap’. We believe that we need to understand the needs of people who live with ASD in Africa in order to make sure we can find ways to meet those needs.
Our aims are simple but ambitious – we want to ensure the highest possible quality of life for all people who live with ASD in Africa and their families.
We aim to do this through:
- Interdisciplinary clinical research that has a direct relevance to people with ASD and their families
- Teaching and training of parents, professionals and members of the public
- Advocating and lobbying for the needs of people with ASD and their families
SCREENING & DIAGNOSIS – We are interested in evaluating and developing screening and diagnostic tools that can work in low-resource, African settings. The aim is to have freely-available tools that are culturally-fair, culturally adaptable, but high-quality. We want screening and diagnostic tools that can be used by clinical teams in community settings, not only in specialist settings.
INTERVENTIONS – We are interested in evaluating and developing treatments that will empower families and will help people with ASD develop their skills. Treatments need to range from the most basic to highly-intensive. Given the limited resources in Africa, we are particularly interested in parent/carer-led and parent/carer coaching approaches.
TEACHING & TRAINING – We are interested in evaluating and developing training and teaching approaches that will be accessible and appropriate for families, people with ASD, professionals, policy-makers and the general public. Unless everybody knows more about ASD, we are not going to improve the quality of life and positive ‘citizenship’ for all people with ASD.
TECHNOLOGY – Given the environment we work in, we are very interested in evaluating and developing strategies and tools that can use technology to reach people. We believe that technology can be a very powerful way to help with screening, diagnosis, treatment and training.
UNDERSTANDING SYSTEMS – We are interested in understanding the health, education and other systems that people with ASD live in and have to navigate. We believe that coordination of care and developing joined-up systems can improve the life journey and experience for everyone.
We believe that it is important to do our clinical research in a way that is responsive to the social needs of the communities we serve. Many members of the Centre for Autism Research in Africa (CARA) are therefore actively involved in a range of social responsiveness activities, including talks and radio appearances to the general public, membership of non-profit organisations (such as Autism South Africa an Autism Western Cape, Tuberous Sclerosis International), engagement activities with family groups, schools, and engagement in policy development work with Government Departments. The CARA team led in the formation of a User/carer organisation for South African families who live with Tuberous Sclerosis Complex (access Tuberous Sclerosis South Africa by clicking here), and in publication of national guidelines for TSC (click here to access publication).
Building the next generation of researchers: We are always interested to hear from volunteers, students, prospective Masters’ and PhD students, and post-doctoral researchers. Click here to contact us.
Building knowledge and expertise in the professional community: We are also interested to hear from professionals who may be interested in specific training such as in screening and diagnostic tools or interventions. Click here to contact us.
Building a research community in partnership with families: We are also keen to hear from families who live with ASD anywhere in Africa who may be interested to participate in some of our research projects. Click here to contact us.
Funding autism research in Africa: We are also keen to hear from anyone who may be interested to fund specific aspects of our work. Click here to contact us.