Feature Article: Define the Condition, not the Individual- One Story About Living With Autism.

It is lunchtime and I’m waiting for Jack, a fellow student, to meet me in the library at Bendigo TAFE’s city campus. I met Jack in 2014, when we were both taking Novel class in the Professional Writing and Editing course. We soon discovered a mutual love of Japanese manga and anime. Jack’s into Naruto, I’m a Bleach fan. Jack writes in the Fantasy genre and he’s also into gaming. This year we share two classes. He’s agreed to be interviewed about his experiences of living with Autism Spectrum Disorder, or ASD, which is a condition affecting a person’s communication skills and the ability to socially interact.[1]

On the surface, Jack appears a somewhat shy person, unassuming and polite, however, I was surprised when Jack revealed he is autistic because I found him as socially adept as other students. What first impressed me about Jack was that he’s articulate and pleasant to talk to and interested in other opinions which isn’t unusual for younger students, although it generally takes some time for them to relax enough to engage with mature age students on a peer level.

ASD is more prevalent in males and as the name suggests covers a range of behavioural parameters. According to, Autism Speaks® (2015);

ASD often causes individuals to struggle to understand and relate to other people and to their environment and this can often result in extreme behaviour, which can be seen as tantrums in children or rudeness in adults. It is the only way they have to indicate how anxious they are feeling.

ASD affects one in every 110 people, is a lifelong condition, and cannot be cured. People with high functioning ASD often have average or above-average IQs, although early intervention is important to assist people to reach their full potential in all aspects of their lives.

However, I’m interested in Jack’s personal experiences of living with ASD, his take on Autism, memories and his viewpoint of the world. I want to record a story from the individual’s point of view, not an interview that ends up defining the person by their condition.

Jack walks in to the library with a long and casual stride that is quintessentially part of his relaxed demeanour. We move to the lounge area and sit down. It’s also the area where the library keeps its manga collection. We get straight down to it because time is limited. Jack has just come from the morning’s Screenwriting class and, like me, he’s only got an hour’s break before he’s off to the afternoon’s Short Story class.

I explain my angle for the interview to him. He nods and says he’s okay with that. He begins by telling me about his early life growing up near Taradale, a small country town in Central Victoria. Early on in his life, Jack’s mum noticed differences in Jack’s development and behaviour. She sought the opinion of several doctors, convinced that something was not quite right. Although Jack exhibited some indicators, he didn’t show the lack of social skills characteristically associated with ASD. Typically, some of the comments made were that Jack was slow or stupid. However, Jack’s mum persisted and finally she arranged for Jack, who by then was six years old, to see Child Psychiatrist Professor Bruce Tonge who has a practice in Melbourne and Woodend, and who immediately diagnosed Jack as having High Functioning Autism (HFA). ‘The doctors didn’t pick it up because I have better social skills than is normal for people with ASD. I remember Mum sitting down and explaining some of it to me, but I didn’t really understand what it meant then,’ says Jack.

As one can imagine, the school years were tough for Jack. He attended Taradale Primary School and was subjected to years of bullying and taunts, and being ostracised. The school was small and the principal at the time was also the maths teacher. ‘I have very limited capacity with maths and whether he was ignorant or didn’t care, or just didn’t believe me, I don’t know. I sat outside in the corridor day after day, excluded and isolated from the rest of the students because he thought my behaviour was deliberate. I remember being cold and feeling very alone.’

Jack’s school life improved when he reached sixth grade and transferred to the primary school in Kyneton. The staff and the environment were far better and Jack finished his primary school education on a more positive note. It took him nearly the entire year to relax and learn some of the social interaction skills he’d missed out on.

However, the improvement was short-lived. He attended the Sacred Heart Catholic College in Kyneton where he was once again subjected to bullying and where the teachers took little interest in his progress. Secondary school was hell for Jack. He had trouble forming friendships – in fact he had no friends – in or outside of school. Jack shakes his head, the pain of those memories revealed in his eyes and his tightly drawn mouth. ‘There were 700 or so kids at the school. I was back at the bottom of the food chain. I was insecure and fought with everyone. You start lying to your family. Mum would ask, “How was your day?” I didn’t tell her. I kept quiet about what was going on.’

Outside of school, Jack developed a reputation as a bit of a bad boy. In a small town word gets around fast. Jack was trying to deal with anger and frustration which was then compounded by anxiety after he left school. People with ASD have trouble adjusting to change. His family thought he was becoming a feral kid and he came to the attention of the local police. During these years, Jack’s one source of love and stability was his family. Home was his safe haven, the place where he was valued. Gaming was one escape, Japanese manga was another. With their fantasy settings and story lines, his interest in writing and plot development also grew.

Life finally turned around for Jack when he enrolled in Bendigo TAFE’s writing course. Attending the institute opened a new world for him. Jack loves the environment and the teachers. ‘I was surprised by how friendly everyone is. People are mature and they know what they are here for, not just the teachers, but the students as well.’

The positive turnaround had an unforeseen flow-on affect in his home town. People began noticing the change in Jack especially his peers and even younger kids. He was no longer the town’s feral kid; in fact Jack has become a bit of a role model, especially for others with ASD. ‘I’ve had kids ring me wanting to talk about what I’m doing at TAFE. Now I see some of those kids on the train and here on campus,’ he says smiling. Jack still works hard to read social cues, alert to making any social faux pas.

We finish talking and Jack heads off to the café to grab some lunch. During the afternoon, I have Jack’s story playing over in my head. It wasn’t the stories of bullying and the tough years at school that affected me, as bullying occurs readily enough even for kids without ASD. What shocked me most were the attitudes of Jack’s teachers, and how a child in today’s education system could be abused and ostracised so openly by teachers as well as students, and get away with it.

A person isn’t less of a person because of a disability. Spectrospective[2], hosts a collection of video stories from individuals living with ASD every day. What Jack’s story and its underlining message shows is that ASD and other ‘conditions’ are defined by a narrow group of people, usually in positions of power, who foist these definitions onto others. This is compounded by the literature and information made available to the public.

Jack’s story is unique and at the same time very normal, because many people who have lived with conditions either physical or mental don’t consider they have a disability. A deaf student, I used to support attracted a large audience during one lecture/tutorial on educating children with a disability. She didn’t consider her condition a ‘disability’. She’d integrated and developed as a non-hearing person from birth, and yes, the correct term is ‘hearing impaired’.

A few years ago I attended a talk given by a woman who shared her experiences of raising a child with ASD. Out of all the topics discussed the one I remember most clearly was the diagnosis parameters of ASD. I realised that I ticked a few of those diagnostic boxes myself, and when I discussed it later with my dentist, he laughed and said ‘Ooh, a little OCD there.’

My point is that we are all different and people are quick to attach labels to others. Tick enough boxes and you are diagnosed with whatever the test is for. Since the power to determine what is ‘normal’ lies with health experts and professionals, those who don’t fall within this range are the ones who end up wearing these labels.

One measure of our development as a society is how effective we are as individuals in breaking down barriers and changing attitudes to include those who are perceived to be different.

April 2 is World Autism Awareness Day.

Help or information about ASD is available from your local health care specialists or search online for resources.

Autism Victoria now trades as Amaze at http://www.amaze.org.au/discover/about-autism-spectrum-disorder/what-is-an-autism-spectrum-disorder/

[1] Amaze is the new trading name for Autism Victoria.

[2] Spectrospective is a project hosted by Amaze to celebrate World Autism Awareness Day, 2015.

References:

Amaze.org, 2015, viewed 6 May 2015, <http://www.amaze.org.au/discover/about-autism-spectrum-disorder/what-is-an-autism-spectrum-disorder/>

Autism Speaks, 2015, viewed 8 August 2015, <https://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit/how-are-and-hfa-dif>

Amaze, 2015, Spectrospective: Stories of Autism, viewed 6 May 2015,

<http://www.spectrospective.com.au/?gclid=CNuWhsqWpMUCFYyXvQod6zkAHg>

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