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Have you ever wanted to be involved in research studies but not sure what to expect?

By Felicty Klopper and the Autism Research Team with special thanks to Jennie

One very interesting study we’ve got going on is the UNIQUE Autism research study, which is looking at what twins can tell us about autism spectrum disorders (ASD). Identical twins with ASD are rare and offer a unique opportunity to discover more about causes of ASD.

Jennie, one of the mothers involved in the study has twin girls, one of whom was diagnosed with mild ASD. Coming from a science background Jennie knows how important twins are to medical research, and the unique opportunity they provide to researchers to learn more about how genetics and experiences can impact development.

“When two people look the same, seeing firsthand how different they can actually be is amazing. To be able to explore the causes of those different personalities and at the same time help to further our understanding of ASD was really interesting to me. A small amount of our time could lead to valuable data that may help my children and also children of the future.”

Jennie continues to be surprised at how different her twins are; before they were born she was worried she wouldn’t be able to tell them apart, but immediately realised they’re very much unique individuals!

“One was happy to snuggle with dad watching the footy while the other preferred to stay as close as possible to mum. One would happily fall asleep on her own while the other shuffled closer to her sister for hugs. As toddlers they each showed different strengths. One is creative and loves pink, frills, dancing and singing. The other has an amazing attention to detail and loves counting, writing and learning Spanish. Even when they share a common interest it will always be appreciated in a different way. I have found that other children are the best at telling them apart, even if they happen to be wearing the same thing. They truly are unique!”

These differences are what made being involved in the research so interesting, Jennie found it fascinating to see how her girls can be so different while still sharing the same genes, and growing up in the same environment.

“Watching how they approached the tasks in different ways, described their experiences differently and each enjoyed different aspects of the experience was enlightening. I also think that celebrating how truly special they are, and the unique opportunity that they have in helping advance our understanding of the genetics involved in autism is really important.”

Jennie also said the girls loved their visits to the hospital, and it was a pleasure to be involved in the whole process.

“All of the staff and researchers involved in completing the study were amazing. The rapport they built with the children was amazing. I had my doubts that the girls would cooperate for many of the tasks, but was surprised to see how comfortable they were and what a great time they had. There was no pressure to complete any tasks and there were ample opportunities for breaks when the children needed them. Both myself and the children found it enjoyable and my girls even asked when they could come back for another visit!”

To discover more about UNIQUE Autism visit our recruitment page, and for more information about autism here are the facts.

If you have any questions or comments please contact:
Shawn Stevenson
Shawn.Stevenson@rch.org.au
03 9345 4673

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