Autism community stories

This page features a collection of stories from people who are on the autism spectrum, and people who have loved ones, children, or family members on the spectrum.

Self-identity and autism: Zoran’s story

Zoran Bekric is a drama graduate from Flinders University, and award-winning screenwriter, and short story writer, who worked on the set of MacLeod’s Daughters. He was also diagnosed with autism when he was 44 years old.

Currently working on his first nonfiction book, Zoran works at Autism SA as a volunteer three days a week, to give back to the community that helped him to identify his “quirks”.

We spoke to Zoran about what it meant to get a diagnosis, how it helped with his self-identity and what he wants people to know about autism.

“Getting a diagnosis was useful in that it gave me a label to apply to my quirks, and character traits,” Zoran said.

“After I was diagnosed, I went away and researched it and was able to identify which traits were autism, and which were just me – this allowed me to figure out ways I could work around the things I couldn’t change. In that way it was useful, and it did release a lot of stress.”

But apart from thoroughly researching every piece of literature he could find about autism, Zoran said he “largely ignored” the diagnosis for a number of years.

“I automatically went on to a mailing list for Autism SA when I was diagnosed, which I filed away and hardly acknowledged for about eight years, but one day an invitation came through for a workshop with Greg Healy who is an autism consultant – so I went along and actually found really useful.”

“It’s one thing to read the literature about autism, but until you meet other people on the spectrum you really don’t have any idea just how diverse it really is. Everyone’s experience is different. I also realised after meeting people with autism, that a lot of my friends were probably on the spectrum too.”

The value of getting a diagnosis

While Zoran admits getting a diagnosis was valuable for his self-identity, his advice to adults who may be thinking about a getting a diagnosis would be to ask themselves, “why?”.

“If you’re seeking a diagnosis, start by asking yourself what you hope to get out of it,” he said.

“If you’re looking for peace of mind, or to better understand who you are and why you behave in certain ways, go for it; if you’re looking for support services be really sure of what you want to get out of it.

“Diagnosis can be expensive, and as a relatively bright, independent adult, you may be deemed as someone who doesn’t need support, or funding.

“Having said that, you might not realise how useful certain support services could be until you seek a diagnosis – I have friends who have found Occupational Therapy really beneficial for instance.”

For parents of children who are seeking a diagnosis, Zoran said it can be enormously valuable, as early interventions can really help children to adapt and develop.

“For kids, an early diagnosis can be life changing, there are so many services and therapies that can be applied, such as speech pathology, and even respite for parents, that can make life a lot easier,” he said.

At 56, Zoran knows that an autism diagnosis is what you make of it, and in his case, it has been an opportunity to discover himself and a community that understands him.

It has also made him more aware of some of the misconceptions and misunderstandings surrounding autism.

“One of the main things I like to explain is that people with autism have varied abilities and character traits, there’s not one single experience of autism,” he said. “Having said that, there are a few common traits that many people on the spectrum have.”

Hierarchy blindness

“Ordinary people see the “top dog” as soon as they walk into a room, whereas people on the spectrum just don’t, I refer to this as hierarchy blindness,” Zoran said.

“People on the spectrum see everyone as equal, or as a peer, and as a result often get themselves into trouble for not treating superiors as authority figures.”

This is particularly noticeable in children, as institutions such as school are clearly defined by hierarchy, both in the classroom with the teacher, and socially, in the playground.

“A lot of these hierarchies are not formalised, but everyone seems to recognise them, except for autistic people,” Zoran said.

“Because of that, it’s easy for people to misinterpret autistic behavior as being deliberately defiant or provocative, but really it’s just that autistic people don’t see or understand these social nuances.”

Self-soothing

“Most people self sooth, it’s just that when you’re on the spectrum it can be more obvious,” Zoran said.

“Ordinary people might play with their hair, or doodle on a note pad while they’re focusing on a task, but these automatic behaviors go largely unnoticed. Autistic people do the same thing, just in an unexpected way, they might slap their hands, or rock on their chair, instead.”

“A lot of this comes down to focus – when autistic people are distracted by a task they give 100% of their attention to it, which means they often don’t see or recognise other behaviors – both their own, or other peoples.”

The solitary forager

“There’s a theory that people with autism have adapted their behaviours over time to achieve great things,” Zoran said.

“Many people on the spectrum have exceptional abilities, can absorb huge amounts of information and are very good at paying close attention to things without being distracted.

“Being seen as asocial is just one part of this,” he said. “People have a binary view of social behaviour, you’re either social or asocial, but being social exists on a spectrum.

“In my opinion, people with autism like to be around other people and have relationships, they just don’t feel loneliness as strongly as other people might, they can survive without social interaction.

“It’s not one or the other, it’s somewhere in between – like how blue slowly turns into red by being purple for a while.”

It’s not a stop, it’s a delay

“A lot of people perceive autism as just kids having meltdowns in supermarkets, but that’s only a very small percentage of the autism spectrum, and in those cases the kids were in situations that were overwhelming them,” Zoran said.

“You wouldn’t put a child with epilepsy in a room with flickering lights, so don’t take a kid with autism to a busy supermarket.”

Zoran also emphasises the importance of seeing developmental delays for what they are, delays, not the end.

“Children with autism don’t just stop developing, they are very capable of learning and developing, it’s just delayed,” he said.

“That’s why intervening early is so important, because if you’re given negative feedback at pivotal times in your development you’ll live up to that feedback and shut down, or not even try.

“People with autism can do just about anything if they’re given the professional support, encouragement and time to do it.

“I once had someone ask me if their two-year-old autistic son would ever drive, which I found a bit funny, I know lots of people on the spectrum who can drive.”

Autism and intellectual disability are not synonyms

“There’s a broad presumption that autism and intellectual disability are one and the same, but they’re not,” Zoran said.

“There are some people who have both, but there are a lot of people with autism that don’t have any co-conditions, they’re independent variables.”

Zoran believes that this common misconception came from early studies of autism, which only included the severe cases of autism which co-existed with intellectual disability.

“We now know a lot more about autism, and that it’s a broad spectrum of experiences,” he said.

“There are a range of presentations and we’re seeing this more widely acknowledged in our culture, with characters on TV and in films, like Sheldon on the Big Bang Theory, which is great.”

Culture clash

Zoran said that if there’s one piece of advice he’d give to people who want to better understand those on the spectrum, it would be to act as though they’re from another culture.

“When someone from Germany or China is visiting Australia they might not know some of the unspoken rules we adhere to here, or certain sayings, or quirks that we all widely acknowledge as part of our culture,” Zoran said.

“It’s the same for people with autism – we often don’t understand the unspoken rules that are somehow built into our society, we can intellectualise them, but we can’t often pick up on them.

“So if you give us the same allowances as you’d give someone from another culture, you should get along just fine.”

Click learn more information visit our Getting a diagnosis adults page.

My brother Tom: Hannah Neale

Hannah Neale is a 25 year old professional whose younger brother, Tom, was diagnosed with autism when they were children.

Having worked in an autism support role, as well as growing up with a brother who has autism, we spoke to Hannah about her personal experience, how people’s understanding of autism has changed, and what she want’s people to understand about the spectrum.

When did you find out that your brother Tom had autism?

My brother Tom is 21 now but was diagnosed with autism when he was three years old. I was 7 when he was diagnosed and remember coming into the lounge room and seeing mum hysterically crying on the couch.

He’d been getting tests and things, so I knew something was up, but from her reaction I thought he was going to die. That’s when she told us he had been diagnosed with autism.

How did you and your family feel about the diagnosis?

It was a really emotional time, I knew Tom was different, he couldn’t talk, and clapped his hands a lot, but I didn’t really know what autism was until mum gave it a name.

Because none of us really knew what autism was, or what it meant, we saw it as a real deficit at the time, it was all very doom and gloom for a while there. We were mortified, upset, and for a long time none of us could even say the word “autism”.

I’m 25 now and have just finished working at Autism SA in a senior management role, supporting families who have received an early diagnosis of autism for a child or sibling.

How have people’s perceptions of autism changed over the years?

It’s interesting how the narrative has changed in such a short time, nine out of ten parents who have received a diagnosis are much more hopeful about it now, they know what to expect and they know they’ll be fine, because there is funding, and there are services and there’s a support network there to help them through it.

Often times, it’s the diagnosis people hope for, it’s preferable over something more debilitating. Many people with autism live very long, full and amazing lives.

Because of that, the community focus is on what is possible now, through allied health services and early intervention. There’s a lot more acceptance, awareness and hope.

How did you talk to your brother about his diagnosis?

Tom has an intellectual disability as well as autism, so is lower functioning. Because of this it was hard to talk to Tom about his autism early on. When he was about 10 years old we decided it would be important to explain autism to him, before other people, or kids started to.

We started with the positives, focusing on how he’s really good at remembering all of these crazy facts, then started talking about some of his challenges, then linked those behaviours to his autism diagnosis.

How do you talk to other people about autism?

It’s much easier these days, everyone knows what autism is, so there’s not so much to explain. Having said that, because so many people are aware of autism, there are also a number of stereotypes. I find I’m constantly having to educate people about autism being a spectrum, and that every experience of autism is different, and everyone on the spectrum will be impacted in a different way.

Autism is very common now, and because of this a lot of people know someone on the spectrum and assume their experience is the same as everyone else’s. The hard thing with autism is that the spectrum is so broad – you can have someone on the mild side of things, who lives in their own home and has a job and a family; while another person could be on the severe end of the spectrum needs constant in-home care.

What advice would you give to a parent whose child has just been diagnosed with autism?

My one piece of advice to families of children who have received a diagnosis would be to try and look at your child the same way you always have. They’re the exact same person, they haven’t changed, and having autism is just one part of who they are. Try not to let the autism get in the way of your perception of them and focus on their strengths.