Autism: How Much Do We Really Know About It?

Most of us know the word but how much do we really understand about autism? Pro Bono News spoke with members of the community about their experiences in light of new research highlighting general awareness, knowledge and understanding of autism.

On Monday, Amaze – the peak body for autistic people and their families in Victoria – released its first ever research on community attitudes and behaviours towards autism. It forms part of its Do One Thing For Autism campaign, aimed at promoting a greater understanding of how autistic people can be better supported in the community.

Statistics included in the report were collected through a questionnaire that took place between 3 July and 21 July 2017 from a total of 1,297 participants varying in age, gender and educational qualification.

Among these participants, contributors were a mix of people with autism, carers of someone with autism or neither of the two.

The results showed that 97.9 per cent of respondents were familiar with the term autism while a further 86.1 per cent from this bracket had direct contact with an autistic person.

But the research highlighted a gap between awareness and understanding of the disability that affects more than one in 100 people.

Marilyn* is in her mid-thirties and her daughter Lyria* (not their real names) is aged five and has level one autism. She spoke to Pro Bono News about her experiences surrounding Lyria’s autism.

Before her daughter, Marilyn admits that she wasn’t as knowledgeable about autism as she is now.

“My understanding of autism was very similar to the mainstream understanding of a child who is non-verbal and ‘in their own world’. I saw autism as a really sad and awful thing,” Marilyn says.

“I actually think I’m pretty blessed to have an autistic kid, it keeps me on my toes and I find it so much more interesting and fun. It obviously has its challenges, but I don’t see autism as a pathology, just a difference.”

According to the report, 88.4 per cent of respondents knew of the different characteristics autism could manifest in individuals and 77.8 per cent knew that people with autism found it harder to develop friendships.

Where Lyria was concerned, Marilyn observed a wide and varied range of traits that were associated with autism, and found that at times some of the behaviours, preferences, and needs changed.

“[Lyria]’s highly articulate with an amazing memory, and incredible attention to detail. She’s creative, both in an imaginative sense and also in her ability to think outside the square,” she says.

“That said, she is incredibly literal when it comes to language. She has some sensory needs which are beyond the usual preferences people might have, and when these needs aren’t met she can become incredibly emotional after being exposed to too much.

“She can become quite fixated on different topics or excessive worry at times and she is painfully aware of how she ‘should’ behave, which is really hard because I see the incredible effort she goes to, in order to pass as being just the same as everyone else.

“Lyria has a lot of empathy, but it often doesn’t show in the way that it does for neurotypical or allistic kids. She is often overwhelmed with feelings of empathy and prefers to shut down or avoid showing those feelings.”

One of the key findings in the latest report is a gap in people’s general knowledge of how to engage with an autistic person.

Amaze CEO Fiona Sharkie says despite the widespread awareness and personal connection, there is a limited understanding of how to help autistic people with only 29 per cent of respondents saying they know how to support an autistic person.

“This research tells a compelling story, whilst almost all Australians know an autistic person, they just don’t know how they’d offer them support,” Sharkie says.

“But the message from autistic people is clear and simple. They told us that if the broader community had a better understanding of autism, it would have a dramatically positive impact on their life.”

Other less-positive statistics to come out of the Amaze report, included “a concern” that 18.8 per cent of people believed people with autism were often violent and 17.7 per cent believed that schools could refuse to enrol a student with autism.

Veda Stewart* (not her real name), vice-principal at a school based in Melbourne, said they would never refuse a child on the basis of autism or any other learning difficulty, nor does she believe they should refuse a child.

“If a child needs a learning assistant, whether they’re funded or not, we try to provide them with an assistant for as much time as they need it,” Stewart says.

Stewart’s school offers education to both junior and secondary learning stages and has observed that more assistants are typically needed in junior schools rather than middle schools.

“The type of assistant changes when you get to the middle school, because middle school students, even autistic middle school students, don’t like to be singled out – often they don’t want to be sitting next to a learning aid, so the aid doesn’t sit next to him (or her) and instead works with students in the room and is always coming back to the autistic child when needed,” she says.

“Teachers will personalise the learning for [them], attempting to get them to progress to the level that they’re able to.

“With autism it’s so different for each child, they could be, you know, very able intellectually or not – it just varies so much.”

Lyria is currently being home-schooled.

“[She] spent six months at kinder and claimed to love every minute of it, because she knew that she was supposed to,” Marilyn says.

“However, throughout those six months I saw my confident extrovert become withdrawn and anxious. On kinder days, Lyria would not eat breakfast and would refuse to take anything other than a single cracker for lunch. She was unable to wind down and sleep the night before. At the start of term three she told me she didn’t want to go anymore – I was so relieved.”

Marilyn says she had considered homeschooling well before Lyria was diagnosed with autism.

“It’s not really autism that made me want to homeschool, more the anxiety that Lyria suffers,” she says.

“That and I love spending time with Lyria and allowing her to follow her passions and spend as much time as she likes on her special interests. She also gets to socialise with kids of varying ages, as sometimes kids the same age are confusing and anxiety provoking for Lyria.”

In the latest report, when asked “To what extent do you think autistic people are discriminated against?” 84.1 per cent of participants said either “to some extent” or to “a great extent”.

Marilyn observes that a lot of people have commented that they had no idea about Lyria’s autism.

“[They say] it’s not obvious or make some comment about how socially engaging, funny, smart [Lyria is] or whatever other adjective they can think of that is supposedly non-autistic,” she says.

“Other kids sometimes ridicule or shame her for things that they perceive as weird or different [and ask questions such as] ‘Why are you doing that?’ with regard to stimming, or ‘Stop copying me,’ as Lyria often used mimicry to engage with other kids socially.”

Sharkie says better support starts with greater understanding.

“If people were willing to do one simple thing to support the autistic person they know, the difference could be huge in the lives of those people,” she says.

To read the full report, head to their website.