Let’s make April the month of being aware of autism – And accepting what that entails
Colour is all around us. It adds flavour (and colour!) to life. There are 12 distinct colours that form infinite possibilities — think of the warm red, yellow and orange shades of an African sunset, or the cool green and blue pallet of the ocean. These distinct colours melt into each other to bring us rainbows.
A rainbow-coloured infinity symbol is the international symbol for autism. It represents the vast range of autism symptoms and many challenges faced by these individuals, but also their unlimited range of abilities. For the past 16 years the autism community has embarked on the “Light It Up Blue” campaign in April to promote autism awareness worldwide. Iconic buildings such as the Eiffel Tower in Paris, the Nelson Mandela Bridge in Johannesburg and King Shaka Airport in Durban are lit up in blue. Everyone is encouraged to wear blue clothes, shine blue lights, and hoist blue flags as a symbol of solidarity with persons with autism, their families and those who love and support them.
Autism is a complex spectrum disorder that is often misunderstood, overlooked or mistreated. It involves communication and behavioural challenges which can range in severity. On the one side of the spectrum are those individuals who have minor challenges and on the other side those who might need full-time care and special facilities. Autism is a lifelong developmental disorder that impacts the nervous system. It starts in early childhood and continues into adulthood.
Communication challenges that negatively impact social interaction are arguably among the most prominent characteristics of autism. In fact, for many children, delayed language development might be the first sign of a developmental disorder. Communication challenges also reflect the whole autism spectrum: some persons might be totally fluent, some might struggle with speech, and some might remain non-speaking, relying on other means of communication such as pictures, signs or communication devices with electronic speech output.
Some people with autism might fail to initiate or respond to social interactions, while others might struggle to maintain a normal back-and-forth conversation. Some might use echolalia, which means that they repeat words just spoken by someone else, in a meaningless way, sounding almost like “parrot speech”. Autistic individuals might also stick to repetitive topics and misunderstand sarcasm or idiomatic speech. Andrew, a 14-year-old, had a severe behaviour tantrum when a classroom assistant informed him that his mother would be a few minutes late from picking him up after school because she was “tied up at work”. Sometimes the communication challenges extend to non-verbal behaviour. For example, when you point to a glass of water, an autistic person might not understand that you are requesting a drink.
Professor Juan Bornman of the University of Pretoria is the coordinator of ECHO Autism SA.
Behaviour challenges are also commonly seen in autism. This is observed as restricted and repetitive behaviour, interests, and activities, such as neatly packing all objects in rows. Stereotyped or repetitive motor movements such as flipping or spinning objects are common, and so is and not using objects or toys in a functional, appropriate way — a spoon, for example, may be spinned around, and not used to imitate an “eating” action or feeding a doll.
Autistic individuals thrive on sameness, and typically have an inflexible adherence to specific behavioural rituals. They become extremely distressed at small changes, such as a teacher who is not at school, changing the route taken to school, or changing the sequence of events in a routine, such as swapping teeth brushing and hair combing around. Restricted eating patterns are notorious. Difficulties with transitions are often noticed; stopping one activity and moving to another is often extremely challenging and may result in behavioural outbursts. Autism is also characterised by sensory and motor stereotypes, and environmental stimuli such as noise and lights are often overwhelming.
Autism looks different in everyone! The unique communication and behaviour profiles differ, as does the level of support needed. However, what these individuals have in common is how exhausting it is to try and fit in. Many autistic adults try to fit in by camouflaging or masking their autism (intentionally or unintentionally) by hiding aspects about themselves to avoid harm or to be accepted. On the surface they may appear calm — but it requires an immense amount of intensive concentration and self-control to achieve that, which is extremely difficult in the long term.
So, for the rest of April, every time when you notice something blue, think about “Lighting Autism Up”! In a world that is often preoccupied with categorising people, assigning them labels, and grouping them together based on sameness, let us rather embrace the whole spectrum of what makes us human. Let us aim for a neuro-inclusive world with increased awareness and acceptance of autism. Let us move away from trying to “cure” or “convert” persons with autism to rather welcome, support and advocate for the rights of persons with autism and their families.
Let us ask people with autism what they want, without pretending that we know. Let us assume competence and see the range of abilities and talents in persons with autism that is so easily overlooked. Let us allow persons with autism to just be themselves — to not make eye contact if that is easier for them, to feel free to stim (repetitive motor movements, use of objects or speech), or to wear noise cancellation headphones. In doing so, we will help persons with autism and their families to claim their dignity and self-esteem.
Let us make blue the colour of possibility. The colour of awareness and acceptance. Let us think blue as we amplify autistic voices and work towards human rights for our whole rainbow nation.
Professor Juan Bornman works at the Centre for Augmentative and Alternative Communication at the University of Pretoria. She is also the coordinator of ECHO Autism SA and past President (2021-2022) of the International Society for Augmentative and Alternative Communication (ISAAC).