Living with autism
Updated: Apr 4, 2019
My name is Tim and at the time of writing this piece, I was 18 years old. I had just finished Year 12 at a mainstream high school. I have severe autism, no speech and a lot of mannerisms such as humming, flapping my hands, and lying on the floor when I get too stressed out. I can communicate using typing with some support. You can read about my journey on how I got to type to talk to people in another piece on "My link to the world."
What’s it like having autism Being autistic means you have to work a lot harder to understand what’s going on, not just around you but within your body as well. I cannot rely on my body to carry out my intentions. If I want to say something, it takes a huge effort to get my point across.
How did autism affect the experience of school I had trouble at school with knowing what was expected of me. Understanding the timetable and activities would have been simpler if I could ask questions, but with no speech and no independent means of communicating, it was mission impossible. I constantly felt left out and isolated.in all the schools I attended - special, primary and high schools. Each had its own problems. The main problem is people’s attitudes towards me and others who are different. People judge me at first sight. I don’t speak, so I won’t be making scintillating conversation. I make sounds when my anxiety is getting on top of me. I don’t cope well in situations I’m not familiar with. When I get overwhelmed I do repetitive things to calm myself down. I can’t tell people about what I’m experiencing. People look aghast and I find myself a social pariah. I was relatively happy at primary school. There were a number of children with complex needs and we were included in many of the programs and well accepted by children. Of course making friends was always problematic since I can’t talk. People usually said hi and tried to chat. High school was a whole new ball game. I was either ignored or received hostile stares from other students and even staff because of my behaviour associated with autism. I felt like a freak, unable to control my body, yet wanting to blend in and to reach out to the people around me. This is when the need to communicate was essential for my new situation and for adjusting to new surroundings.
On the right to communicate
Communication involves not just indicating my basic needs, but more importantly, letting people know my thoughts and feelings. Yet at this crucial time when I wanted to do my best in high school, I was denied the opportunity to use Augmentative and Alternative Communication. This meant that my communication was restricted to people talking to me, without giving me a chance to respond. The clear message was that what I had to say was not worth listening to.
Success in communication very much depends on people’s willingness to accept people with disability and believe in us as individuals with similar and legitimate, albeit complex needs. A open mindset is crucial with a readiness to listen to those who say things differently, that is, not through speech but via typing to communicate.
Making things work again As my frustration and anger mounted I withdrew and gave up trying. I hated school, who could blame me. I threw things, hit out even and ran away from the aides. I hated myself for doing these things, yet was unable to stop because of my intense frustration. The school situation was becoming intolerable, I would not have stayed on at school but for the help of advocates who came in to negotiate with the school for the crucial support I needed for typing to communicate. In addition, my advocates came to my defence for my right to a mainstream education, the choice every student and family is able to make under the Victorian Education Department's guidelines for inclusion.
I first started to type in year 9 with a newly appointed aide. I was able to type short sentences in response to questions, and finally convinced the school authorities that I had brains enough to do the work. In Years 10 to 12, I had another aide who not only supported my typing but became my advocate and friend. I felt a sense of belonging for the first time. Yet because of my high anxiety levels, I avoided most contact with my peers and failed to get to know other students as my self-esteem had been torn to shreds. On the other hand, I manage to complete Year 12 in 2013, but did not matriculate as I was too anxious to complete the exams.
My circle of support
I have, however, been incredibly lucky to come into contact with some amazing people who recognize my ability and intense need for self-expression. My advocates, Emmy Elbaum from STAR Victoria, and Eden Parris, fromCommunication Rights Australia, were brilliant in helping me navigate the minefield of exclusionary practices at my mainstream high school. Another one of my mentors, Chris Varney, founder and Chief Enabling Officer of I Can Network, was instrumental in arranging the opportunity to tell my story at a TEDxMelbourne event in December 2013. Now, I have the dubious distinction of being the first nonverbal presenter, as well as the only speaker who took off his shoes on stage. Still I relished the opportunity to share my experiences on such a prestigious platform and to give voice for those with a disability.
Emmy Elbaum also started up another advocacy organization, Just Learning Inc. with the focus on working towards student re-engagement, and in which I am a proud member .
Eden Parris has left Communication Rights Australia for overseas, but CRA is still doing a splendid job in advocating for those with little or no functional speech.https://communicationrightsaustralia.org.au
Chris Varney is doing excellent work in driving a rethink on the strengths and gifts of autism with the I Can Network. https://icannetwork.com
My Dreams and Aspirations Because of what I went through in high school and because I was able to have advocates who supported my rights to an inclusive education, I would really like to help those in the same boat as myself. People with a disability face immense hurdles every day. I’d like to study at university and to work as an advocate for people with disability.
What people should know about disability In my mind, disability is defined by attitudes. A change in attitude will lead to the acknowledgement and recognition of people with disability as individuals with some differences, but since we are all individuals, we have our strengths and gifts we can share as well. I suspect that this is going to be a long and arduous struggle with many setbacks. Efforts are required from both sides in changing the majority view, people’s mindset towards those with a disability, To include us as members of the human race with essentially the same feelings, goals and aspirations means working together to bring about a more tolerant and caring community which everyone benefits.
This is an amended version of the piece I wrote for Listen Up! Magazine, the publication ofChildren and Young Adults with Disability, April, 2015 Edition.