“IF YOU’VE met one person with autism, you’ve met one person with autism.”
This well-known quote by Dr Stephen Shore, internationally renowned for his research surrounding autism, shows that living with the condition can mean different things to different people.
Because autism is a spectrum disorder, no two autistic people are going to be affected in exactly the same way, which can make it difficult for other people to really understand what autism is.
For people at the severe end of the spectrum it can be extremely debilitating for both them and their family, but for others it may be more mild and less pronounced.
Research commissioned by Victoria’s peak autism body, Amaze, found that while the majority of Australians have heard of autism, less than a third of those actually knew how to support someone with autism.
And it found that only four per cent of Australians with autism believe people in the community know how to properly support them and more than half feel socially isolated.
WHAT PEOPLE WISH YOU KNEW
Autism affects about one in 100 people and the CEO of Autism Awareness Australia, Nicole Rogerson, said there are certain things that people generally don’t understand about the condition.
“You can’t see autism — it is an invisible disorder. Children who have autism don’t look any different from other children,” Ms Rogerson told news.com.au.
“Parents often say to us they wish others weren’t so judgmental when their child is behaving in a slightly different way or they say something that may be inappropriate.”
People with autism process things differently and can become overwhelmed by things that most people probably don’t even notice, like bright lights and loud noises.
Ms Rogerson said that many of the parents they work with experience judgment from other parents who just assume they can’t control their children.
“They get tired of people looking at them and rolling their eyes like they are a bad parent if their child is acting out,” she said.
“If you are in a supermarket and your child is getting overwhelmed and maybe making a scene it makes it 10 times worse when people around you are giving you dirty looks or making comments.”
Research found that 42 per cent of Australians with autism sometimes feel like they are unable to leave the house for fear of people behaving negatively towards them.
Many people with autism have behavioural and social difficulties that can inhibit their ability to interact with others.
This results in a lot of people knowing about autism but having little first-hand experience in fostering social situations where autistic people feel comfortable.
“People with autism are less likely to participate in events or activities unless an organisation or the community specifically sets it up to be inclusive,” Ms Rogers said.
“This leads to people with autism and their families often feeling isolated because it is just easier to opt out from those types of situations.”
HOW TO MAKE EVERYONE FEEL INCLUDED
Ms Rogerson said that if you are unsure how to make an adult or child with autism feel included in a social situation, the best thing to do is just to ask.
“If you are not sure about something and you know someone with autism, just ask them. Talk to their parents or talk to the person with autism themselves,” she said.
“It is much better to ask and learn rather than just shying away from interaction for fear of saying or doing the wrong thing.”
People who have autism and parents of autistic children are usually more than happy for people to ask questions as they are so used to people not understanding or misjudging them.
While autism affects people differently, there are common traits across the spectrum, particularly with difficulty understanding social behaviours.
Autistic people process language literally, which makes it difficult to read social cues such as tone of voice and facial expressions.
For example, idioms like “give me a hand” or “I’m all ears” can be confusing when taken literally.
“Meeting just one person on the autism spectrum doesn’t tell you everything about autism so patience and understanding is essential,” Ms Rogerson said.
According to Ms Rogerson, it is important for communities to continually question whether they are actively fostering inclusivity.
“It is important to really think about whether you haven an unconscious bias in your community or organisation,” she said.
“For example, if you are in a sporting club that doesn’t have any autistic people, ask yourself why that might be and if it is an inclusive environment.
“If our society was genuinely more inclusive then it would be a better world for everyone, not just autistic people.”