The 2nd of April is World Autism Awareness Day, an event seeking to spark conversations around understanding people with autism spectrum disorder (ASD) and to highlight ASD related research initiatives.
This year’s theme is “Assistive Technologies, Active Participation”, which aims to recognise the role assistive technologies and diagnostic tools play in helping people with the condition.
But many activists and researchers are hoping to shine a light on challenges and misconceptions in the African context.
“Autism spectrum disorder is a spectrum, everyone on the spectrum is different – they share some autism characteristics but they react and deal with them differently,” says Pauline Hanekom, ICT coordinator at Stellenbosch University Centre for Pedagogy (SUNCEP).
Hanekom’s 17-year-old son has pervasive developmental delay – not otherwise specified (PDD-NOS), a type of ASD
“Although doctors urged us to institutionalise him at 3 and half years old, we fought very hard, and although he will always need assistance, he passed grade 6 Afrikaans and English (the subjects) and loves reading,” she adds.
Speaking about the misconceptions people have, Hanekom says ASD is not only a children’s disease but a lifelong neurological difference: “It’s a different way of thinking and understanding the world. Different, not less. All [people with the condition] crave is acceptance and [to] be recognised as having worth.”
“Different, not less” biscuits made for world autism awareness day PHOTO: Facebook
“Ultimately I think every parent wants their child to – whether they have [neurodevelopmental challenges] or not – you want to raise an individual who can be independent and function well in society,” says Stellenbosch mother, Anél Voigt.
Voigt’s adolescent son was recently diagnosed with Asperger syndrome, an autism spectrum disorder (ASD).
She says although her son got diagnosed at a later stage, she’s happy that everyone understands him better now. “Everyone now knows there is a reason for his behaviour and there are things we can do to help him cope [with the condition].”
LISTEN: Stellenbosch mother Anél Voigt speaks about the journey of getting her son diagnosed with ASD.
The Centre for Autism Research in Africa (CARA), an interdisciplinary clinical research programme based at the University of Cape Town, seeks to increase research done on the disorder in Africa through a range of projects focusing on technology, intervention and diagnosis.
“The aim is to have freely-available tools that are culturally-fair, culturally adaptable but high-quality,” says Dr. Nola Chambers, a research officer at CARA. “We want screening and diagnostic tools that can be used by clinical teams in community settings, not only in specialist settings,” she adds.
Chambers says researchers need to carefully consider the factors unique to Africa when conducting their research: “These include the social and economic difficulties our families in Africa face that compound the challenges of raising a child with learning challenges.”