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Autism CRC

The Australian Longitudinal Study of Adults with Autism (ALSAA)

June 2017 Update

Hi Everybody,

Check out this update to see where we are at with the ALSAA, call for recruitment assistance, conference activities, other research opportunities and a new team member profile – Dawn Ee. We hope you are warm as we enjoy a cold winter!

Over 200 autistic adults and over 100 neurotypical adults have completed their questionnaire!

There are now 206 adults on the autism spectrum who have completed their questionnaires, which is fantastic. The more people we have participating in this research the more statistical power we have to better understand the lives of autistic adults.  If you are still in progress with your questionnaire please complete it soon. We hope to begin the second round of questionnaires before the end of this year.

See the graph below to see how everyone is going with their first questionnaires.

Graph 1: Total number of registered participants (red bars) and number who have completed their questionnaires (blue bars).

ALSAA Recruitment Assistance

As we come to the end of the first round of data gathering, we are hoping to increase the number of non-autistic males, and the number adults with autism and intellectual disability participating in the study.  If you are a person who meets these criteria, or you know someone who does, please ask them to participate by completing the EOI here.

Conference Reflections – IMFAR – Jane Hwang PhD Candidate

The International Meeting for Autism Research (IMFAR) is an annual meeting that brings together individuals from all around the world to exchange and discuss progress in ASD research. This year, IMFAR was held from the 10th to the 13th of May in San Francisco, California.  Several other PhD scholars and I, post-docs and members of the Autism CRC were privileged to attend. An impressive twenty-three presentations were made by those affiliated with the Autism CRC, the details of which can be found in the program book for the conference here. Below are some reflections on the conference from Autism CRC members in Program 3.

 “IMFAR provided a great opportunity to meet with some of the leading researchers from around the world working with autistic adults to improve their health and wellbeing. We discussed ways we could work together to improve the health and wellbeing of autistic adults in Australia and across the globe.”

“I was pleased to see ‘adult outcome’ as a key stream within the conference.”

“At the special interest group for adults with ASD, the focus was on which measures are most appropriate for measuring the health and wellbeing of autistic adults.”

“I learnt about traditional and atypical forms of anxieties that are present in those on the autism spectrum. Here is a link to a paper that explains it

“IMFAR was a well-balanced conference in terms of addressing many aspects of ASD and living on the autism spectrum throughout the lifespan.”

“Many presentations addressed the need to acknowledge and further investigate the heterogeneity of individuals on the spectrum in terms of their characteristics, needs and experiences.”

“Seeking and receiving a diagnosis of autism in adulthood frequently discussed during presentations and in personal interactions with other researchers.”

Opportunities to take part in other research

Comprehensive Health Assessment Program (CHAP) for Adults

The Comprehensive Health Assessment Program (CHAP) questionnaire tool is designed to minimise barriers to healthcare for people with intellectual disability.  We have adapted the CHAP for autistic adults with intellectual disability and are currently undertaking an evaluation of the adapted CHAP. The evaluation involves the adult visiting their GP to complete the adapted CHAP. This project is being carried out in Brisbane QLD, Melbourne VIC, Sydney NSW and Perth WA.

If you are interested in participating in this project please contact Dr Anna Urbanowicz on (07) 3163 1983 or

Comparing the dental health experiences and oral health needs of autistic adults and the general population.

Prem Brahmbhatt is a Bachelor of Health Sciences Honours student researching how oral and dental health experiences differ between autistic adults and adults from the general population. His research will require participants to complete an online survey about their oral and dental health needs and experiences. This project will provide important data to inform the delivery of oral and dental health services to autistic adults. Recruitment of participants will be commencing soon; if you are interested in participating please contact Prem at or his supervisor Dr Anna Urbanowicz at or (07) 3163 1983.

Developing a National Guideline for Autism diagnosis in Australia – Examining the perspective of adults who have been diagnosed with Autism.

Matthew de Broize is a Bachelor of Health Sciences Honours student researching the experiences of adults who pursue an autism spectrum diagnosis. Matthew's study is part of a broader project aiming to develop the first national guideline for autism diagnosis in Australia. Matthew is currently recruiting adults who identify as autistic to participate in an interview about their experience of seeking an autism diagnosis as an adult. Australian adults who fulfil one of the following criteria are eligible to participate:

•             Individuals on the autism spectrum who received an autism diagnosis during adulthood, or
•             Individuals who are currently involved in the autism diagnostic process, or
•             Individuals who identify as autistic, but have not received a formal diagnosis.

If you are interested in participating please contact Matthew at or his supervisor Dr Anna Urbanowicz at or (07) 3163 1983.

Team Member Profile

Dawn Ee
Role: 4th year medical student UNSW
Site: New South Wales

What do you like most about working on the study? 
In this study I’m focusing on loneliness and friendship. Much research has been done on the general population to establish factors that contribute to loneliness, both internal and external factors. ALSAA will allow us to explore a number of these factors for adults on the autism spectrum. I hope that we can identify important associations to better understand loneliness.

What impact do you hope this study will have in the future? 
Sadly, we know that individuals on the autism spectrum generally experience more loneliness than adults without autism. This is concerning because we are all social beings, and many physical and mental health problems are implicated in relation to loneliness. I hope our findings will be able to inform ways to improve outcomes of loneliness and friendship for people with autism. I also hope that the study will serve to educate the public about the need for improved attention to social and health needs, and thereby cultivate inclusive communities in Australia and beyond.

Something about you?
I’m a 4th year medical student at UNSW undertaking an independent learning research project with ALSAA at 3DN. I grew up volunteering together with my family in Special Olympics sports programmes. It was through this experience that people with autism became particularly important to me. I hope that, through research informing the future practice of medicine and public health, we can make a positive change for individuals on the autism spectrum. 

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

Kind regards, 

Kitty, Jane, Sam and Julian

The ALSAA Research Team 

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

(02) 9385 0620


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