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December 2003

A literary journey - Autism NetVerse

Each year Austism Arts in collaboration with John Hopkins University calls for poets and artists with autism from around the world to submit artwork, poems, short stories and non-fiction pieces to the Austism NetVerse Project. The project celebrates the literary and artistic skills of people with autism and helps raise community awareness about autism.

The 2003 4th Place Winner was Dorothy Lewis-Heselwood for her essay about conferences. Dorothy is an active member of the Australian Gladstone Area Autism Support Group. She is also a partner in Special Needs Australian Products, a home based business that makes visual cueing systems for ASD and visual learners.

Do conferences create opportunities?

Dorothy at the  World Autism Congress in Melbourne.

Dorothy Lewis-Heselwood
4th Place Winner 2003 Austism NetVerse

Having just attended the inaugural World Autism Congress held in Melbourne, Australia, November 2002. I would have to say "yes" that, indeed, conferences do create opportunities in so many ways for people with very different socioeconomic backgrounds. This conference focused on Autism Spectrum Disorders (ASD), including Asperger's syndrome, which are neurobiological disorders; some people affected by these conditions have serious deficiencies in social and communication skills with symptoms ranging from mild to severe. I have a son and teenage daughter with Asperger's syndrome and have recently been diagnosed as having this condition myself.

Firstly, let me tell you what ASD means for me. It involves difficulty in communicating socialising, and adapting to change; heightened sensitivity to sound, touch, smell, lights and people; and difficulty making friends and seeing or understanding other people's ways or ideas, thoughts, and feelings. I am not good at recognising facial cues and may read into a face something that is not there, e.g., anger instead of concern. In addition, high levels of anxiety are a common problem with people with Asperger's syndrome.

For me, personally, the conference was a scary idea that I had in mind. I had hoped to attend but to get there, first, I had to overcome some major obstacles. I suffer severely from anxiety, depression, attention deficit disorder (ADD) and Asperger's syndrome so, for me, it was something that I wanted to do but the fears of actual "doing" part frightened me so much.

I had started counselling and undertaking Cognitive Behaviour Therapy (CBT). During my therapy sessions, I spoke with my counsellor about the congress and worked on small steps to be able to get there. We did role-plays of certain situations I found difficult, giving me valuable insights into different techniques I could use when the anxiety kicked in. For me, the conference was not only topic informative, but, for my own personal growth, an enormous step.

This for me was a journey of discovery to push myself, push my fears and anxiety and to achieve. There was no thought of failing - I had to learn new skills to survive. I had to fly on a plane, learn how to ask questions and directions, and find my way around, get to my hotel, ask which room I was staying in, and mingle and mix with hundreds of people I didn't know. I had to learn to order and pay for my own meals, eat in public, and go to a strange toilet! I had to get past the fear of crowds and the noise, and learn to control what I thought was uncontrollable. I had to learn all these skills that neuro-typical people are able to do every day of their lives. I had to line up for a cup of tea and let people brush past me. All these little things that people take for granted had to be learnt by me as I developed new coping skills. Luckily for me the conference had a retreat room for individuals like myself to go into and just sit quietly and chill out.

This path of autism is so intense. To me, having Asperger's syndrome is like riding a dogem car at the fair -- you're zooming down one path only to be hit, knocked into a wall, an "ideas wall", where you need to back up, reverse, and re - think: which direction now? You're launched backwards to be hit side on and spun into a new direction. To me, that is Asperger's syndrome - "dodgem cars"! You think you're on one path, then suddenly, you're jolted and turn/spun into another direction, facing more "obstacles" on your road before being jolted into yet another direction - just like the dodgem cars at the fair. That's having Asperger's syndrome for me!

The feelings of exhilaration and frustration are, at once, humbling, engaging, and informative but then you're hit and spun into a world that turns your insides upside down then gradually slows enough to leave you in a false sense that you are at your destination. You think you have a grasp on this world of autism then, bang, you're hit and spun again - your theories and your thoughts are taken away from you by something that has been said, done, or shown by someone attending the conference. The other delegates make you think, challenge your own theories and expand your expectations of yourself.

Do conferences create opportunities? "yes"! Why? If it were not for the opportunity to attend this conference and to do a presentation about "Proactive Families in Regional Areas", I wouldn't have had the drive or incentive to get past the anxieties. It was a once in a lifetime opportunity to speak to a multitude of people - a cross section from all over the world and to get a message across about the needs of people in regional areas, and what we can do to help these people. The opportunity not only for personal growth but also the opportunity to learn, create, combine ideas, thoughts and powers to self-achieve, and to come back to the region with new-found knowledge and enthusiasm to keep going, keep learning, and keep giving was invaluable.

Do conferences create opportunities? Indeed, "Yes", they do! Because of my desire and determination to attend the inaugural World Autism Congress in Melbourne, I was able to build on my own personal strengths to create the opportunities, firstly, to attend and then to achieve my goal of presenting a paper at the Congress. To get up in front of perhaps hundreds of people to embark on a PowerPoint presentation to professionals, parents, carers and people on the spectrum required me to learn public speaking, the art of speech writing, and to build a PowerPoint presentation - all these achievements were made over two long hard years because the opportunity was there! I was going to attend the Inaugural World Autism Congress! Opportunities are there for you to seize the day! At the Congress, everyone you would like to meet and perhaps work with further down the track is there to make contact with and to further your knowledge.

The power of public speaking is intense. To overcome one's fears of public speaking, one has to practice daily and become more confident in oneself and for me to achieve this came about by the opportunity to attend the Congress. Once there, and you're listening to guest speakers from all over the world, you are catapulted into their theories and your brain starts to wake up - you're madly writing, taking notes, and filing questions you want to ask the speaker when he/she finishes. That opportunity is there at conferences to challenge, disagrees or agree to what has been said. The create that opportunity - in a safe environment!

One might also attend a conference to sell a product you have found useful in the management of the condition being discussed. These conferences are a great opportunity to sell, promote, and exchange ideas and merchandise. Such conferences also create an opportunity for marketing and self-employment as delegates are frequently drawn from all over the world.

If you wish to present at a conference, the opportunity is there for you to put in a submission to get your thoughts across, including discoveries that you have made within your own family. Mums and Dads from all over are encouraged to voice their opinions, put in submissions, go and stand and be heard. It is a tremendous opportunity to tell the world what you have done and achieved with your son, daughter, or self, and to explain to all what you desire and what you're trying to do in your community. All this is there at conferences, providing the opportunity for you to achieve your goal. If you are a researcher, conference attendance creates opportunities for you to mix with others researchers from all over the world, to hold debate, discussions, learn, share your knowledge with researchers from countries that are perhaps not as advanced as your own, providing opportunities to help and to teach them. Of course, the reverse is often true and there is much one can learn from other delegates.

Of course, conference create opportunities! If we didn't have autism conferences, we wouldn't have the advances we have seen in today's society - in my case, the slow recognition of Autism and Asperger's syndrome in the 21st Century. We have come a long way from locking people up because they are different. Conferences can bring one's cause to the fore with world exposure. Tolerance and understanding should be promoted by conferences and smaller conferences in cities/towns across the globe, which are open to all, not only parents, medical professionals and researchers, but, also, everyday people, should be especially encouraged. In this way, a much larger percentage of the population will know about autism, leading to a new-found tolerance for the boy next door who is different or your daughter's class-mate who has Asperger's syndrome.

Little steps make a huge difference in the great big scheme of things. Without the publicity generated by conferences, conditions like Autism could fade into the background never to be heard of again. Conferences in my opinion do, indeed, make an outstanding difference and create opportunities. Because of conferences, we have students coming up in many fields of learning, hearing new ideas, being inspired to carry the work on for future generations of people with Autism and Asperger's syndrome. We need conferences to create this style of learning and to hear the inspirational speakers of today for our younger generations and, yes, even some older generations. Conferences create opportunities for people with Autism or Asperger's syndrome to get up and speak to tell the world about their world. I feel this is one of the best opportunities people on the ASD spectrum can have - a VOICE created from the opportunity of conferences.

Editor's note

For more information about Austism NetVerse and to submit an entry for the 2004 awards visit the Autism Arts web site. Deadline for submissions is 1 January 2004.

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