The Australian Longitudinal Study of Adults with Autism (ALSAA)
Brief update - February 2017
Check out this update to see where we are at with the ALSAA, opportunities to participate in other exciting studies, conference activities and a new team member profile - Dr Anna Urbanowicz. We hope you are enjoying your summer!
Almost 200 autistic adults have completed their questionnaires!
There are now 191 autistic adults who have completed their questionnaires, which is fantastic. We would love to reach 200! If you are still in progress with your questionnaire - please complete it, as soon as you can. See the graph below to see how everyone is going with their questionnaires.
Graph 1: Number of registered participants (red bars) and number who have completed their questionnaires (blue bars).
There are some big, exciting autism conferences coming up this year, and we are pleased to let you know that we will be presenting some of the first results from the ALSAA study on an international stage. Jane Hwang is attending the International Society for Autism Research conference to be held in San Francisco this year in April. Also, ALSAA researchers will be attending the Asia Pacific Autism Conference (APAC2017) in Sydney, to share findings from this study. Keep an eye on these updates, for your brief summary on the findings from this research.
Opportunities to take part in other research
Visiting the doctor: Autism CHAP study
Researchers at the Queensland Centre for Intellectual & Developmental Disability (QCIDD) at The University of Queensland, and the Autism CRC are seeking volunteer research participants to evaluate a comprehensive health assessment program designed specifically for adults on the spectrum with intellectual disability.
Who can participate?
Adults on the autism spectrum with intellectual disability, together with their support person/s if required
What does my participation involve?
1. completing a short questionnaire about yourself
2. organising & attending an appointment with your GP/health practice nurse to complete the comprehensive health assessment program
3. if you are able to, participating in an interview about your experience of the comprehensive health assessment program.
Contact: Anna Urbanowicz
Phone: (07) 3163 1983
How is the Brain Wired?
We are seeking the help of men (aged 18-45) on the autism spectrum without a significant learning disability to participate in a study examining brain connectivity. Participating involves completing a social-communication and neuropsychological assessment, having an MRI scan (no radiation), and providing a blood sample.
The study is taking place in Brisbane, at the University of Queensland, and generally involves three visits to the university. It may be possible in some circumstances to reimburse the costs of travel for volunteers traveling from outside Brisbane.
If you would like to learn more or participate, please contact David Trembath at D.Trembath@griffith.edu.au
Team Member Profile
Autism CRC Research Fellow
What do you like most about working on the study?
I have been working on this study for about 18 months and the best thing about it has been being able to work within a team of autistic adults and researchers that are passionate about improving the lives of autistic adults in Australia. It’s been great to learn about the individual strengths of autistic adults, which often compensate for my own weaknesses (e.g. my less than perfect grammar), and I look forward to continuing to be part of this study and to learning from my autistic peers.
What impact do you hope this study will have in the future?
This study is crucial to developing a greater understanding of the needs and strengths of autistic adults living in Australia. There is little information available about the health and wellbeing of Australian autistic adults and their healthcare needs. Also health professionals working with autistic adults often lack knowledge and experience in the field. However this study has the potential to inform health care policy and health professionals. In particular I am keen to see the information from this study used to inform changes to the Australian health care system to ensure it meets the needs of autistic adults.
Something about you?
I am also an occupational therapist and have always worked to support individuals with disability to participate in everyday life and enjoy a good quality of life. I hope my contribution to this study will translate to enhanced participation and quality of life for autistic adults. I also love travelling, particularly back to Poland where the majority of my family live.
As always, please feel free to contact us with any questions or comments.
Kitty, Jane and Julian
The ALSAA Research Team