Monday, 24 March 2014

The future of autism

Autism lasts a life time, so while early intervention is a great thing it’s also suggested people with autism often need ongoing support into adulthood to fully reap its benefits. A few weeks ago on March 6th the Autism Cooperative Research Centre (CRC) was launched at Parliament House. I was lucky enough to be invited to attend the event. This is an important development not just for small children on the autism spectrum and their parents, but for those of us who are aged far past the opportunities of early intervention programs.

One of the great things about the Autism CRC is that it has focuses on autism at three different stages of life, including adulthood. If we can find solutions and support for some of the issues facing adults (such as employment, social development, independent living skills, self-determination and mental health) it will not only help them, it is likely to also benefit children receiving early intervention as they grow up. The Autism CRC brings together diverse and enthusiastic experts from over 50 Australian and international organizations and centres together with every day people and communities working and living with autism in order to approach issues in a broad and innovative way.

My greatest challenge coming into adulthood was working out who I was and how to accept myself. My Asperger's Syndrome diagnosis formed part of that journey. I am one of the lucky ones. I live independently, attended university, work full-time and recently became engaged. My brother, who didn't start talking to us until he was four, is also doing well. He does volunteer work (which has included teaching himself how to do accounting) while he contemplates whether to study his physics PhD. I have met many others who have skills, talents and interests but have yet to find a way to translate them into the modern workforce. They may experience additional barriers to employment such as sensory differences, transport and mental health issues or haven’t had some of the skills and supports necessary for them to build a business from what they do well.

Autism is for life but it's not a death sentence. We live and try to fit into a society governed by social rules and skills we don’t naturally acquire (and may not always develop even with lots of hard work). But we shouldn't think our value as people comes down to our social fluency. I wouldn't be where I am today if I didn't work on certain social skills from time to time, but if I focus too much on this without accepting myself I end up feeling like a failure and getting depressed. Like everyone we need to change, but we also need to embrace who we are.

Balancing change with acceptance allows you to embrace the joys as well as face the challenges. Both kids and adults on the autism spectrum benefit from being able to explore their natural curiosities and those around them benefit from discovering the beauty within how their minds work. In my life I've had to work hard for some things, but it's helped me to appreciate them. I don't always see things the way others do but that's sometimes an advantage. I sometimes get my kind and easy going nature taken advantage of but that's because I'm hard wired to seeing the good in people and I wouldn't ever want to change that quality about myself. Life can be hard, but it's also worthwhile.

I want a brighter future for my generation as well as the ones coming after us. The Autism CRC provides a great opportunity to embrace the whole-of-life approach and find solutions that will benefit us all and give people the opportunity to find joy and pursue their aspirations. I hope that by researchers listening to the needs of people with autism we will realise new opportunities for better understanding and support for them in education, in the workforce and in their communities.