Society is still far from truly understanding autism

Published on Stuff.co.nz / Manukau Courier 

April is Autism Awareness month. Autism is a development disorder, which affects language, social skills and behaviour. People that have been diagnosed with autism interpret what is happening around them, in a way that is different from others. Every person with autism is different and their needs are specific to their own individual personalities and environments.

OPINION: I grew up with a severely autistic uncle. At 43 years old, he is the youngest of my mum's siblings. Even though he is unable to speak, he communicates by pointing to things, dancing or humming the tune of 'I just called to say I love you' by Stevie Wonder to let us know when he is in a good mood.

As a child, I quickly noticed the way people would stare or move away from us at the beach, shops and restaurants whenever we were out with him. Being around my uncle for most of my childhood, along with my siblings and cousins, meant that we quickly learned to ignore people that felt physically uncomfortable in his presence. As long as I was ok to turn my back on their discomfort, I never felt the need to question or challenge awkward sideway glances and gestures.

My feelings have changed however, since then. I recently read an article about an autistic woman. Her name is Jessica. Unlike my uncle, Jessica can speak and although she is legally an adult, her family describe her as having the intellectual ability of a 14 year old. The article was about Jessica's parents trying to bring her home because she had changed her name and travelled with a new passport to India to see her boyfriend. Despite the relatively complex circumstances, which led to Jessica leaving the country, it was clear that she was in a vulnerable position and had been taken advantage of.

I then did something that I always regret. I read the comments section. Several strangers from the internet were calling her nasty names like 'stupid' and condescendingly began their ill-informed responses by saying things such as, 'Well if she's smart enough to change her name and get her own passport then…' These comments are the perfect example of how far our society is from truly understanding autism. Although I previously believed that avoiding rude stares was the best way to deal with ignorance, I realise now that I was wrong.

Upon reflection, I should have taken the time to explain autism and not to be frightened by uncle's sudden movements; it's just the way he communicates. I should have told them about how forward thinking my grandmother was when she gave birth to him in Samoa in the 1970s and sacrificed absolutely everything to travel to New Zealand so he could receive the necessary care and support. I should have invited them to watch him swim out past the boats and explain that the reason why he is an incredibly confident and strong swimmer is because my grandparents lived right next to the ocean for many years. I should have asked them to challenge him in a jigsaw puzzle race. He would definitely win.

It's no secret that people living with autism experience high levels of stigmatisation. This stigma evidently stems from a lack of awareness and appreciation of all the great ways that autism can positively influence the way we see the world and others around us. Ignoring prejudice and stigma serves no positive purpose. We must continue to share experiences and actively demonstrate our support by listening and learning. It's important to recognise that people with autism have unique and extraordinary perspectives and skills. Once we understand this, we can then begin appreciating the significant ways that people with autism can contribute to our society.

For so long and so often, people continue to ask questions such as, 'Have you taught him how to say this word?' or 'Have you tried teaching him to keep still?' But that's a problematic place to start. When you meet a person with autism, I encourage you to instead pause and ask what they can teach you. I promise, you will hear, see and appreciate things more clearly.

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