Reflections on autism awareness month

Policies of education must be aligned to United Nations conventions that require that every child has a right to equitable and inclusive education. Picture: Pixabay

Policies of education must be aligned to United Nations conventions that require that every child has a right to equitable and inclusive education. Picture: Pixabay

Published Apr 28, 2024


By Tswelopele Makoe

On the 2nd of April, nations from around the world commemorated the 17th annual World Autism Awareness Day (WAAD).

The month of April has also been deemed Autism Awareness Month, first initiated by the Autism Society in April of 1970.

This period of observation is significant in spreading awareness and acceptance about autism in our society. The theme for the 2024 Autism Awareness Month is: “Awareness, Acceptance, Appreciation: Moving from Surviving to Thriving.”

Autism Spectrum Disorder (ASD) is a neurological and developmental disability. It is defined by differences in the brain, which affect how people communicate, interact, learn, and behave.

Closer to home, this past week, Unisa hosted a seminar on autism awareness and acceptance. The seminar had an array of panellists, including government officials, higher education staff, autism activists and advocates, as well as parents of pupils with ASD.

The seminar highlighted a stark contrast in the way that children with ASD and other learning disabilities experience our national education system.

In South Africa, there is limited data available on the prevalence of ASD. Over 1.2 million South Africans are diagnosed with ASD. Research has indicated that the prevalence of ASD has an increase of 15.18% per year. Overall, 1 in every 100 children globally has ASD. Studies have also shown ASD to be more prevalent in males than females.

There are countless developing countries that do not have reliable autism statistics, often due to a lack of information and resources. This means that most autism research is from affluent, mainly English-speaking countries.

Research in our local context has also shown that prevalence rates of ASD among children are directly linked to parental awareness and education on the matter.

Generally, autistic people have difficulties interpreting social rules and body language, which can lead to confusion, communication difficulties, misunderstandings, difficulty in forming and maintaining friendships, amongst others.

Ultimately, spreading awareness about ASD is the best way to foster acceptance about autistic people, and various other neuro-divergent people. Neurodiversity refers to the concept that people experience and interact with the world in many different and unique ways.

There are innumerable children - and adults - living with undiagnosed ASD. Commonly, ASD becomes evident during early childhood development, with symptoms including a delay in language or social development.

A diagnosis of ASD often has two categories of symptoms. One set of symptoms may present as restricted and repetitive interests or patterns of behaviour.

Another set of symptoms may include problems with communication and social interaction. Diagnosed autistic people oftentimes experience symptoms in both of these categories.

Additional symptoms may include seizures, irregular sleeping patterns, unexpected emotional reactions, and countless other unsuspecting behavioural symptoms.

Autistic people often engage in “stimming”, a form of self-stimulating behaviours, such as repetitive motions or speech. Stimming usually comes about as a coping mechanism that helps combat sensory overload. For example, someone might repeat a phrase, bite their nails, clap their hands, or rub an object.

It is pertinent that society is educated about ASD, and fosters an environment where differences are embraced, rather than ostracised. As a collective society, we need to shape an environment where obtaining information, support and treatment have to be painless.

Seeking diagnosis and intervention is essentially easier when there is less discrimination and stigmatisation. Countless autistic children struggle through schooling years undiagnosed – many even dropping out or moving to specialised schools. Educating our entire society on ASD is pertinent to overcoming it.

It is therefore exceedingly commendable that Unisa has hosted an event of this magnitude. Unisa, hailed as a leading mega-university on the African continent, has played a pivotal role in the expansion of knowledge around ASD.

There are innumerable South Africans, some of whom are autistic, who are wholly unaware of the internationally recognised commemoration of Autism Awareness day. This highlights the substantial lack of awareness around ASD in our contemporary society.

Unisa’s seminar on Autism Awareness had an array of various speakers who had been directly affected by autism. A mother of an autistic student, Mrs Rethabile Moshoeshoe-Molapisane, had outlined her tenacious fight to educate her community about ASD – from neighbours to petrol station attendants, to police stations, and beyond.

The openness and reiteration of information around ASD not only spreads awareness, but also creates familiarity with the disorder and those that are diagnosed with it.

The awareness and acceptance of ASD should be promoted from early ages. It needs to be instilled not only in the curricula, but also the socialisation of young people.

This not only promotes the proliferation of knowledge, but also meaningfully shapes a society that is compassionate and inclusive of neuro-divergent people.

Speaking at the autism seminar, Dr Emile Gouws, an autistic self-advocate, and a post-doctoral fellow in the College of Education at Unisa, said that the purpose of the seminar was to facilitate discussion and share “authentic experiences of parents who are raising neuro-diverse children like myself”.

“Sometimes people don’t understand us because we are special.” It was especially significant to have a speaker who was autistic and had accomplished such a high level of scholarship. This emulates the unlimited potential of autistic people in our education systems, despite their learning challenges.

Ultimately, education for ASD children seems to be in the hands of their parents. Ignoring the complexities associated with educating children with disabilities is a violation of children’s rights as outlined in the United Nations Convention on the Rights of Persons with Disabilities of 2006.

Every child, irrespective of their ability has a right to education. However, children with ASD are completely ignored, according to Juliet Carter, the National Director of Autism South Africa.

This is further exacerbated by the glaring absence of government commitment to allocating resources to enable implementation of programmes meant to support and assist people with disabilities. There is no support for about 2% of the South African population who have autism.

Ignoring the complexities associated with ASD, however, cannot be tackled in isolation. ASD is a lifelong condition which requires service throughout the lifespan of an individual.

There is a challenge across global societies on the social aspect of autism awareness and acceptance. A lack of education around ASD means that countless autistic people face stigmatisation, ostracism, manipulation, abuse, harassment, among many other challenges.

What make matters worse is that there is no policy that provide framework for service delivery including education for children with disabilities. There are no systems in place to identify and provide essential early intervention programmes.

We need to create an environment where obtaining information, support and treatment is painless, says Carter. Seeking diagnosis and intervention is easier with less stigma.

Policies of education must but be aligned to United Nations conventions that require that every child has a right to equitable and inclusive education. People with ASD need safety, acceptance, and a sense of competence.

Although autism can be a life-long condition, proper provisions, combined with appropriate and tailored support, people living with ASD can make significant progress and live meaningful, fulfilling lives.

Support systems such as families, organisations and specialised schools play a considerable and pivotal role in the development and success of autistic people.

Social support, financial support, specialised medical services, alternative education programmes, coping mechanisms, and various other forms of support are often provided by families, friends and community members who care for autistic individuals.

We cannot forget that autism is a national challenge, and that as citizens, we each have a responsibility to foster a fair, knowledgeable, and empathetic society.

ASD affects people all around the world, regardless of race and ethnicity, culture, or economic background. Supporting those living with ASD and other neuro-diverse conditions needs to be undertaken by every sector of our society.

Embracing our differences – the very nature of ubuntu/botho – is what continues to foster a more tolerant, adaptable, and progressive society. Acclaimed screenwriter and activist Lena Waithe once remarkably said: “The things that make us different, those are our superpowers.”

* Tswelopele Makoe is a Gender & Social Justice Activist, published weekly in the Sunday Independent & IOL, Global South Media Network and Eswatini Times. She is also an Andrew W Mellon scholar, pursuing an MA Ethics at UWC, and affiliated with the Desmond Tutu Centre for Religion and Social Justice. The views expressed are her own.

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