Dear Ms. Hassen,
The Association for Science in Autism Treatment (ASAT), would like to thank you for writing such an important article, South African Mother Battles Stigma Over Autism (April, 2016). We are also grateful to Primrose Mooi, the mother from the article who shared her family’s journey with autism. Stories like this are so important for journalists to share, as they help to illuminate the varying degrees of autism awareness, acceptance, and levels of services across the globe.
Autism spectrum disorder refers to a group of complex disorders of brain development (rather than an incurable mental disorder). Autism awareness is the effort to bring awareness to this unique condition. The stigma surrounding autism is evident in societies around the world, and your article does a wonderful job discussing some of the specific challenges facing families in South Africa. In the article you mention that “A 2015 South African study revealed that social stigma was worst towards ‘Black African groups’ suffering from autism, that are often residing in lower socio-economic areas where there is a significant lack of awareness about the condition.” In fact, based on cultural beliefs in these areas, autism is often blamed on “supernatural means like witchcraft.” Inherent to a diagnosis of autism, are challenges in communication, socialization, thought processes, as well as behavior, and while these deficits create barriers in the absence of necessary evidence-based interventions, they are even more difficult to overcome when the society you live in attaches that type of stigma to you.
While the characteristics vary tremendously across individuals with autism, the constant is a need to improve understanding and awareness about it, and also to establish access to evidence-based treatments. Concerns about increasing autism awareness and access to treatments are evident worldwide, particularly in developing nations. This awareness is key to beginning to eliminate the stigma of autism, particularly in areas where it is attributed to long-held cultural beliefs. Articles, such as this one, can help to address this stigmatization by disseminating the milieu of a particular country, as highlighted through the struggle of a pioneer in awareness and education, such as Primrose Mooi.
You emphasize the importance of global awareness in the scientific community, acknowledging the argument of Academic Head of Clinical Services at the University of Cape Town, Professor Petrus de Vries, that “the scientific community should start thinking more ‘globally’ to make research efforts ‘applicable, appropriate, transferable and scalable’ to people in all countries.” Autism awareness, research, and treatment are certainly international concerns, not unique to any one part of the world. An effort in South Africa is an effort for all individuals with autism. We at ASAT hope that your article will generate continued awareness and help to remove the stigma associated with autism, worldwide.
Sincerely,
May Chriseline Beaubrun M.Ed., BCBA and Elizabeth G. Callahan, MA, BCaBA
Association for Science in Autism Treatment
