Colour is a ubiquitous presence in our lives, from the bright shades of a beautiful sunset to the cool blues of a serene ocean. However, for the autism community, colour takes on a special significance as a symbol of hope, solidarity, and awareness writes Professor Juan Bornman.
A rainbow-coloured infinity symbol is an 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 have embarked on the “Light It Up Blue” campaign in April to promote autism awareness worldwide. Iconic buildings such as the Eifel 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.
The reality of autism
Autism is a complex spectrum disorder that is often misunderstood, overlooked, or mistreated. It involves communication and behaviour 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 one of 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 persons with autism might fail to initiate or respond to social interactions, while others might struggle to maintain a normal back-and-forth conversation. Some persons with autism 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.
Supporting people with autism
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.
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 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 swopping teeth brushing and hair combing around. Restricted eating patterns are notorious. Difficulties with transitions are often noticed so 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 as overwhelming.
Autism looks different in everyone!
Their 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 this 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 welcoming, supporting, and advocating 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, 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. – Health-e News
Professor Juan Bornman is from the Centre for Augmentative and Alternative Communication at the University of Pretoria. Prof Bornman is also the coordinator of ECHO Autism SA and past President of the International Society for Augmentative and Alternative Communication (ISAAC) (2021-2022).