PACA’S mission is to bring together African Organizations spearheading efforts of improving the quality of life for individuals living with Autism Spectrum Disorders through awareness raising efforts, proper diagnosis, education, and evidence-based early and ongoing interventions in Africa. PACA aims to be a one-stop shop for information and resources for parents of children with Autism Spectrum Disorders and practitioners.
PACA is the first body of it’s kind drawing on the common interests of all who work with persons with autism in the African continent. PACA exists to ensure that autism is recognized as a disability in Africa and receives the support both resources and monetary for the betterment of the lives of individuals with autism in Africa.
PACA’s mandate is as follows:
1.To organize and host an annual African autism congress.
2.To draw membership from ALL African countries.
3.To forward post conference proposals to the African Union and to ensure their adoption and support.
4.To ensure that the Convention on the Rights of Persons with Disabilities (CRPD) agreed principles are understood and applied as concerns of persons with Autism Spectrums Disorders in Africa
5.To benchmark and promote good practice for all organizations and individuals working with persons with Autism.
Background and Purpose
Recognition of autism as a neurodevelopmental disorder to be studied, understood, and treated
is a fairly new phenomenon in Africa, so new that the first educational programs for children with autism were started in the early 2000. However, the interest in autism as a focus of study as well as treatment has grown enormously in the past few years. While there are currently many facilities in Africa with educational programs for children with autism, most of them focus on programs that are not evidence based, are expensive and services are minimal and may focus on areas such as sensory integration and diet therapy. The current situation for children with ASD and their families in Africa must change. Several actions are needed now to propel autism research and services in Africa. First involves increasing knowledge among professionals and parents about the biology, behavior, identification and treatment needs of people with autism. There is a need to sensitize the African community about Autism. A Regional conference that provides current information and provides potential collaborators and resources to the autism community in Africa would meet this need.
Second, there is a need for training for researchers and clinicians in diagnosis, treatment approaches, and scientific questions and designs involving autism. Accompanying a Regional conference with focused training workshops would provide the most talented people in Africa with immediate tools to apply to autism research and treatment. In addition, while Applied Behavior Analysis is evidence-based practice for the treatment of ASD, there are very few trained Behavior Analysts and ABA trained Therapists in Africa. The current proposed conference will be an avenue to discuss a way forward in order to change the current situation.
Third, there is a need for mandated government policies in relation to individuals with autism in Africa. Providing information to government officials about national policies concerning autism in other countries would directly influence service delivery to all persons with autism and their families.
Fourth, information about the effectiveness of intervention very early in autism must be provided to stimulate development of early intervention services. The lack of early intervention in African countries has profound effects on people with autism. A study completed in 2005 compared Kenyan children with autism (who lacked intervention) to African American children with autism (all of whom had received community interventions), matched by age revealed alarming differences. 35% of Kenyan children with autism in the sample were non-verbal compared to only 1% of African American children. Providing information concerning early brain maturation and plasticity to professionals and government officials is crucial in order to stimulate provision of early intervention research and services and improve outcomes of all people with autism.
Fifth, there is a need for proper early diagnosis of autism. The current diagnostic tools were all developed and normed in the west and there is need for an Afrocentric diagnostic tool that is sensitive to African culture. A diagnostic tool that can be used by pediatricians and other health professionals will not only allow for early screening and diagnosis, but also early intervention.
In order for research and services for autism to move forward in Africa, researchers, clinicians and families must understand what is known about biology, behavior, treatments, and outcomes in autism. It is for these reasons that we are proposing to organize a “Pan African Congress on Autism ” conference to be held in Kenya—to educate professionals and empower parents. The purpose of Pan African Congress on Autism conference is to address the five needs identified above: (1) to jumpstart autism research through increasing knowledge for professionals and parents (2) to provide hands-on training to the professionals in areas that will help move the research and practice forward: diagnosis, methods, practice, research design and analysis, (3) to influence governmental policies regarding services and supports for people with autism and their families, (4) to provide information about the power of early intervention and effective early intervention approaches, (5) to develop an Afrocentric Autism Diagnostic tool.
Provision of the conference and short term training courses will pave the way for infrastructures for autism treatment and research programs. It will support new collaborations between African professionals and researchers from other countries. This conference will also be used as a platform for a prevalence study of Autism in Africa. Finally, it will provide support and information to families who are currently struggling with their sons and daughters with autism.
Jane Weru Paul, Ph.D., CEO & Clinical Director, Excella Developmental Services
Ruth Tenai, CEO, Step up 4 Autism Foundation
Cyndy Muchine, CEO & Founder, Kenya Autism Alliance
Jacqueline Mathaga, CEO, ADAT Foundation
Hussein Mshunga, CEO, Tanzania Autism Resource Center