Autism: Why aren’t we aware?
Early diagnosis, research and education are the top priorities for South Africa this World Autism Day (2 April). Many are unaware of the condition, despite it affecting up to 2% of people on the planet.
A lack of awareness, appropriately-trained professionals and investment are three reasons why, in South Africa and other low-resource settings, “resources that can improve the lives of those affected by autism are mainly limited to those who can pay for them”.
This is according to South African Society of Psychiatrists (SASOP) which said autism is a term used to describe an array of conditions falling under the umbrella term autism spectrum disorder (ASD).
ASDs are “developmental disorders linked to early brain development” and, while the causes are unclear, genetics and environmental factors are believed to play a part, explained SASOP.
“ASD results in difficulties in social interaction, verbal and non-verbal communication, sensory perception (either heightened or lowered sense of touch, taste, smell, sight or hearing), and patterns of narrow interests, cognitive (thought) patterns and repetitive behaviours,” added the organisation.
Autism in South Africa?
Globally autism is thought to affect between one and two percent of people according to the organisation Autism South Africa.
While very little data exists on the extent of autism cases locally, 2016 research published in the Lancet medical journal it is estimated that sub-Saharan Africa has seen a more than 70 percent increase in the number of children with developmental disabilities, including autism, since 1990.
Yet in 2015 there were just 50 specialist child and adolescent psychiatrists in the whole of sub-Saharan Africa, according to SASOP.
Despite ASD being recognised by the World Health Organisation as a global public health concern, “almost all we know about it comes from western, high-income countries” and resources “are mainly limited to those who can pay for them”.
This is according to SASOP’s Dr Wendy Duncan who added that more is needed in South Africa, and the continent, “to understand the nature and prevalence of autism, so that a better response can be developed and resources, such as support and education, can be provided”.
Scale up low-cost solutions
Writing in autism publication spectrumnews.org in January, University of Cape Town autism expert Professor Petrus de Vries noted that the necessary individualised care could be effectively delivered through community, family and community health care worker programmes.
He noted the importance of scaling up these “proven autism therapies that caregivers can deliver at home” that “aim to enhance communication and social interaction by capitalising on a child’s motivations and interests”.
Children diagnosed as being on the autism spectrum show a wide variety of symptoms and each case is unique, but the disorders are underpinned by issues with social interaction and communication.
For example, the protagonist in Mark Haddon’s novel The Curious Incident of The Dog in the Night-time, a young boy named Christopher diagnosed with ASD finds it almost impossible to read emotions from other people’s facial expressions. As a solution, a list of emotions with corresponding drawings of ‘emojis’ or ‘smiley faces’ was created for him to help decipher social cues.
“I kept the piece of paper in my pocket and took it out when I didn’t understand what someone was saying,” he explained at the onset of the novel.
According to SASOP one of the many signs of ASD is a lack of “awareness of, or disinterest in others, difficulty interacting socially, lack of eye contact” as well as “a dislike for being touched or held”.
The early warning signs of autism, according to United-States-based organisation Autism Speaks.
Parents should be cautious about autism and seek a professional opinion if they notice these developmental delays in their children:
- By six months the child shows “few or no big smiles or other warm, joyful and engaging expressions” and “limited or no eye contact”
- By nine months there is “little or no back-and-forth sharing of sounds, smiles or other facial expressions”
- By 12 months there is “little or no babbling”, “little or no back-and-forth gestures such as pointing, showing, reaching or waving” and “little or no response to name”
- By 16 months the child has said “very few or no words”
- By 24 months the child has spoken “very few or no meaningful, two-word phrases (not including imitating or repeating)” – Health-e News
An edited version of this story was published by Health24.com