’We need too move beyond awareness for those with autism’
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Cape Town - April marks Autism Awareness Month and Director for Action in Autism, Kirsten Miller, said while awareness is needed, respect and acceptance of those with neurological differences is also needed.
“Autistic people have called for neurotypical people to move beyond awareness. Autism Spectrum Disorder (ASD) is their reality, their voices and lives. Everyone knows about ASD, we need to open up our spaces and be more inclusive.”
Autism is a neurodevelopmental disorder that affects the functional abilities in an individual’s cognitive, emotional, social and physical domains. Autism can be diagnosed at any age. It is important to note that autism is a spectrum of disorders existing in several variations, so it differs from individual to individual.
Third-year PhD student and specialist teacher at EDU360, Emile Gouws, said he only started displaying ASD tendencies at the age of three years old. It came to light, when he started pre-primary school, that his behaviour was impaired and that he experienced challenges in language and communication. He did not communicate with fellow children. Flexibility in thinking, behaviour and sensory perception remained a challenge.
“Questions were raised about my functional abilities as I still could not communicate, not only in a mainstream schooling system but in the broader society. I learned more through visual stimulation. In mainstream primary school, the principal referred my parents to RAU University, where therapists did an in-depth evaluation. A disciplined team observed my behaviour and confirmed that I revealed ASD tendencies. I was non-verbal till the age of 15 years.”
He added that due to advancements in technology and better access to research, ASD is better understood, however, there are still many misconceptions around the disorder.
“I think we understand the autism diagnoses as more research is available and case studies to study from. However, in the same sentence, it is a field in which new findings are sought daily. Although the findings are meaningful, it is sometimes not relevant concerning the South African context due to our social, economic circumstances of most South Africans.”
With regard to the inclusion of people living with ASD, he said a lot of advocacy is required at an educational and occupational level.
“As a specialist teacher, I currently find the CAPS curriculum is content-focused and can overwhelm those students with autism, cognitively and sensory-wise. Some specialist schools are searching for another alternative curriculum (overseas-based) to follow that is a more skills based approach.”
This Autism Spectrum Disorder Awareness Week, Gouws would like for fellow citizens to know that individuals living with autism are unique and, the majority of them, are experts in their own fields.
“Try to get to know the person behind the diagnoses. You will be amazed by the person you will meet.”
Autism South Africa (ASA) director, Juliet Carter, said that a challenge many NGOs face when addressing a plan to aid autistic people in South Africa, is insufficient statistical information.
“We have a great challenge, as services and support systems for autistic children and adults in South Africa are at a minimum. We do not have accurate autism prevalence statistics in South Africa. Planning for services on a disorder is almost impossible without knowing how many people are affected by the disorder. Annual diagnostics stats of ASD are not obtained from hospitals, which is an issue that needs to be addressed.”