But with one in 100 people in Australia currently living with an autism diagnosis, there is an ever-growing movement quietly working to change that negative perception. Is autism a disability? Or is it actually a gift that bestows a unique set of skills and abilities on identified individuals? Or is it both?
Despite more people than ever before being diagnosed with autism, scientists are still at a loss as to what exactly causes these conditions. And those with autism regularly become victims of bullying and isolation. So in a society that values conformity over difference, how do we create a meaningful existence for this group of unique individuals who sometimes describe themselves as 'living on the wrong planet'?
The answer is relatively simple, in theory. We need to celebrate difference rather than looking upon it as a negative.
People diagnosed on the autism spectrum are the subject of extensive research and media attention. But as researchers, we fail young people and adults with autism where it counts. We need to actually ask people who have autism (or their families) what is important and meaningful to them in their lives, and translate our research into practice.
Creating a meaningful life is a goal most people aspire to. Why should it be any different for people with autism? We should provide them with all the supports available to help them create a life that is meaningful and fulfilling for them.
At La Trobe University's Olga Tennison Autism Research Centre (OTARC), we are interested in research involving people with autism, and involving people with autism in our research. In translating our research into practice, we must understand the challenges faced by adults with autism alongside their strengths, talents and individuality.
This is critical in providing a balanced perspective and supporting people with autism to lead the life they want to and find what is meaningful to them.
The stories that follow illustrate the very different lives of two people on the autism spectrum. Both individuals have different levels of ability and capability, but both are living a life that is meaningful to them.
Robert's story: "I have a Bachelor of Engineering with Honours from the University of Adelaide and a diagnosis of Asperger's Syndrome. After finishing my studies I worked several jobs, one of them was full-time as a salesperson. However, I found it difficult to engage with customers and to sell the company's product. It was a challenge to make a living and I relied largely on government payments to get by. I was ecstatic when I got accepted into a four-week training and assessment program offered by Hewlett Packard Enterprise and the Department of Human Services (the Dandelion Program). This process removed the stress of a traditional interview and provided an excellent environment for me to learn about the job, develop new skills related to software testing and show the abilities I already had. It was also a place where I could meet and become friends with others who share my gifts and challenges. I was offered a position and have been employed for over a year as a System Test Analyst. I have made new friends with my work colleagues, I no longer rely on government payments and my wife and I have moved into better housing. In the future I look forward to learning about other roles in the IT sector and further developing my skills."
Lisbeth's story: "My son Miles is 36 years old. He lives semi-independently in a self-contained bungalow in our backyard but is still dependent on us to facilitate his social and recreational life, provide emotional support and help with basic needs like shopping and banking. Miles works two days a week in supported employment as a ceramics worker and attends a supported art program the other days. He is very capable with household chores and uses public transport. Miles' independence is enhanced by his mobile phone. Although he never makes phone calls to people outside the family, he lets us know where he is or if he will be late for an appointment and we are able to talk him through difficult situations. Disruption of routines or unexpected changes can lead to anxiety – we therefore plan ahead and provide plenty of notice of changes. Unfortunately there are times when prior warning is impossible. Miles is involved in athletics and ten-pin bowling with Special Olympics, and he enjoys railway excursions, bushwalking, movies and music. He is a keen environmentalist and recycler and is passionate about sharks and marine life, which often figure in his paintings. Miles is aware of his autism but identifies as 'artistic' more than 'autistic'. At 20 years of age, he developed a keen interest in arts, particularly painting. He has since held two successful solo exhibitions and participated in numerous group exhibitions, selling much of his artwork to collectors. Miles' activities and varied interests add to his sense of self-worth and enjoyment of life. He leads a very full life."
These two stories highlight potential, possibility and finally, success. They also show that difference can be celebrated, not ridiculed, and that autism doesn't have to be viewed as a life sentence.
As scientists, we want our research to make a difference and we want it to result in more stories like Robert's and more families like Lisbeth and Miles'.
But science alone is not enough. It is critical that communities know what is possible and follow through. Living a meaningful, happy life might be as simple as sustaining meaningful relationships. These could include those living with and connected to autism, friends, family, co-workers, school mates or support staff. For anyone, with or without autism, the heart of a meaningful relationship is acceptance, appreciation and respect for the individual and also for their diversity of life and lifestyle. Everyone is different, irrespective of autism, and everyone deserves a chance at a meaningful life.
This article was written by Dr Darren Hedley, Associate Professor Amanda Richdale, Ms Lisbeth Wilks, Dr Mirko Uljarević and Professor Cheryl Dissanayake, from the Olga Tennison Autism Research Centre (OTARC), La Trobe University. Mr Robert Tedesco is an employee of Hewlett Packard Enterprise and the Department of Human Services. These organisations fund research at OTARC and a Research Fellowship for Dr Darren Hedley.