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Autism CRC

The Australian Longitudinal Study of Adults with Autism (ALSAA)

Brief update - July 2016

Hi everybody,

Even though we are in the middle of the colder months, the ALSAA Research Team is certainly not slowing down! This update lets you know about how our first community event went, introduces another team member, provides information on where we are at with the study and lets you know about opportunities to participate in another exciting study. We hope you enjoy!

Autism MeetUp - Our first community event

On 2nd April 2016, we held a community event at UNSW in Paddington, Sydney. We wanted to showcase all the different research projects we are involved in, as well as give you a chance to come and meet us in person. The event was very successful with over 70 autistic children and adults, family members, carers/support people and health professionals in attendance. See some pictures below from the event.

Image credit: Reuven Matalon

Thank you to everyone who attended, and also thanks for those that provided us with some feedback. We are happy to report that 94% of people who gave feedback were 'satisfied' or 'very satisfied' with the event and said they were 'likely' or 'somewhat likely' to attend the event again next year.

Here were some of the comments left by attendees at the Autism MeetUp:

"(I liked the) casual and approachable atmosphere. Engaging researchers who are clearly committed to furthering our knowledge base." 

"(I liked) being able to move freely amongst various tables, meeting and chatting... As an advocate, parents benefit from open opportunities like this to get the sense of support, and information exchange between parents, looking forward to future events." 

"It was good to meet some of the younger researchers and discuss their projects... It was refreshing to be exposed to newer ideas, some brought about of course by increasing medical technology"

ALSAA Update

Participation in the study continues to grow. We have now registered:
  • 251 autistic adults over 25 years of age
  • 195 carers/support people of autistic adults
  • 50 carers/support people who are willing to complete a questionnaire about an adult with autism and intellectual disability
  • 195 non-autistic adults who will make up the control comparison group
If you are still in progress with your questionnaire, please complete it and return to us at your earliest convenience!

What's coming up?

The ALSAA research team are fortunate enough to be attending some interesting and exciting conferences in the coming months. We will be sharing some of the first explorations of the ALSAA data and also be presenting about findings from large linked datasets from NSW. The main topics of interest for these conferences are quality of life and mortality amongst autistic adults. The first conference will be the International Association for the Study of Intellectual and Developmental Disability (IASSIDD) - World Congress to be held in Melbourne in August. Watch our for an update from this conference in our next ALSAA update.  

Do you have a non-autistic friend/colleague who can help out with the study?

We are currently looking for non-autistic adults to complete the questionnaire (we are still also looking for autistic adults, carers and support people as well!). If you know of someone aged 25 years or older, who would be willing to volunteer their time and complete a questionnaire about their own health and wellbeing, please send them this link: or ask them to contact the research team. Phone: (02) 9385 0620/ email: 

Team Member Profile

Name: Kitty-Rose Foley
Role: Co-leader of ALSAA, Research Fellow
Site: Sydney, NSW

What do you like most about working on the study? 
My favourite part about working on this study is meeting and speaking with autistic adults, carers, support people and health professionals who all have a passion and a desire to improve understanding and overall life for people living on the spectrum. Everyday I learn more about the neurodiverse world we live in, and the amazing potential that each neurdivergent individual has to offer.  

What impact do you hope this study will have in the future? 
It is so important that society gains a better understanding of what autism is and what it can mean for an individual and a family. This encompasses an improved understanding of all of the strengths and challenges faced by an autistic adult and the people around them.The comprehensive set of questions and topics covered in these questionnaires provide Australian-first insights into the lives of autistic adults. I hope findings from this study will be the first step in educating professionals, policy-makers and the general population about what life is really like for autistic adults. Hopefully the findings from this study will invoke changes in the attitudes of the general population and changes to services and policies which will improve experiences of wellbeing for autistic adults. 

Do you live in or around Sydney? Do you travel around Sydney?
ASPECT are looking for young autistic adults who have completed high school and are under 30 years of age to participate in a research project which aims to develop an app and other resources to enable young adults on the autism spectrum to have better access to and use of public transport. They are also looking for family members and support workers who care for, or support a young adult on the autism spectrum to participate in this project. Participation involves taking part in a small discussion group or an interview.

To find out more about the study and register to participate, contact 
Kaaren Haas, Research Assistant, Autism Spectrum Australia
(02) 8868 8508 |

As always, please feel free to contact us with any questions or comments.

Kind regards, 

Kitty, Jane and Julian

The ALSAA Research Team 

Australia Longitudinal Study of Adults
on the Autism Spectrum (ALSAA)

(02) 9385 0620


CRC Australia - An Australian Government Initiative

Cooperative Research Centre for Living with Autism (Autism CRC)

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