The Australian Longitudinal Study of Adults with Autism (ALSAA)

Brief update - October 2016

Hi everybody,

Spring is finally here and with the start of the warmer months, comes another update on the ALSAA. Also included in this update, is a summary on the IASSIDD conference in Melbourne, a number of great opportunities for autistic adults to participate in new and innovative research, and a team member profile of Professor Julian Trollor.

World Congress on Intellectual and Developmental Disability held in Melbourne

In August, some of the ALSAA research team headed to Melbourne for a huge international conference on intellectual and developmental disabilities (IASSIDD). The theme of the conference was 'Global Partnerships: Enhancing Research, Policy and Practice.' Our team provided presentations about quality of life for autistic adults and what factors may influence it. Also, we presented data about mortality in adults on the autism spectrum in Australia. In the coming months, we will be writing up these papers, and emailing a brief summary to all ALSAA participants. 

Congratulations!
At the World Congress two of our team members were presented with awards for excellence in research in the field of intellectual and developmental disabilities. These researchers are helping to put research involving autistic adults to the forefront of peoples minds and hopefully prompting increased interest and focus on this important area.

• Jane Hwang was presented with a travel grant for her work relating to mortality in adults on the autism spectrum from the Economic and Social Research Council (ESRC) in the UK and;
• Kitty-Rose Foley was presented with the Stevens - Shapiro Memorial Fellowship, for young researchers under 35 years of age who are actively involved and passionate in the field of intellectual or developmental disabilities. 

From left: Lyn McPherson, Kitty-Rose Foley, Cindy Nicollet, Nick Lennox and Anna Urbanowicz

ALSAA Update - please complete your questionnaire!

Autistic adults, carers/support people and neurotypical controls from all over Australia are currently completing their ALSAA questionnaires. We really need YOU to COMPLETE your questionnaire as soon as possible! See the graph below of the percentage of each group who have completed their questionnaires so far. With your help, we hope to reach 100% for every group!

Graph 1: Proportion of registered participants who have completed questionnaires


Also, here are some of the comments from autistic adults, provided at the end of the self-report questionnaire: 

“I hope it helps people like me”

“I am grateful for the opportunity to have participated in this study and I look forward to reading about the results”

“Hope the data helps you to understand us better. Please remember Autism=neurodiversity, those of us on the spectrum we are all unique individuals with spikey profiles. We have some strengths and some very significant challenges…”

“Thankyou for doing this research because I don’t think there is enough being done for people with autism”

Snoösphere 2017 - a multisensory experience with a focus on autism, featuring autistic creative partnership

Lull Studios and UNSW would like to invite autistic persons of all ages to join us as creative advisors in designing a gallery-based art installation.

Snoösphere is a space made up of interactive sound, vision, aroma, and touch-controlled elements, in which people can roam and explore. It is an immersive space for promoting discovery, empathy and understanding of the spectrum of neurodiversity.

Named for the noösphere, which is the phase in the Earth's evolution after the biosphere - a future planetary sphere of mind - the Snoösphere promotes embodied consciousness of the sensory and energetic properties and performance of physical space.

We see this as the especial province of autistic artists. Instead of being passive end-user, autistic participants are an influential part of developing Snoösphere, putting into practice the ethos "Nothing About Us Without Us."

Dr. Dawn-joy Leong is the autism consultant for Snoösphere, personally facilitating the interesting and fun autism-friendly sessions.

Participants will experience creative engagement and learn about the process of building a multisensory interactive environment aimed at supporting the sensory needs of autistics. Contributions from our autistic advisors will be duly acknowledged in the final production.

Introductory consultation sessions and workshops for small groups and individuals (completely free) will be held 17-20 November 2016, at UNSW Art & Design, Paddington.

Please feel free to contact Dawn-joy for more detailed information, or to register your interest in becoming part of our project. Dawn will reply to emails promptly and no question is too trivial.

Email: dawnjoy@mac.com
Phone: 0477424585

 

Emotion regulation study

Currently recruiting adults (18 years and over) with autism to participate in a study looking at the relationships between emotion regulation and outcomes.  Contact: Ru Ying Cai r.cai@latrobe.edu.au

Autism app to help young adults get around on public transport 

How easy is it for young adults on the autism spectrum to get around on public transport? What do you think? What’s been your experience using public transport?
A team of researchers with the Autism CRC are working to create an app to help young adults on the autism spectrum to get out and about – but first they need to hear what you think about transport options for young adults on the autism spectrum.
Can you help?
If you’re on the autism spectrum, aged under 30, you’ve left school and you regularly travel around the Sydney region, OR if you’re a family member or guardian of a young adult on the autism spectrum who lives in Sydney, here’s your chance to tell them  what you think, and about your experiences using public transport.
To find out more and register, simply go to https://www.surveymonkey.com/r/autismpublictransport

Team Member Profile


Name: Julian Trollor
Role: Co-leader of ALSAA and head of the Department of Developmental Disability Neuropsychiatry
Site: Sydney, NSW

What do you like most about working on the study? 
During our work on ALSAA, I have been encouraged by the interactions I have had with autistic adults, carers, support people, health professionals, and researchers. It is wonderful to be part of the Autism CRC to share in this work. As a medical doctor, I have spent years helping people with developmental disorders in a clinical setting. It has been refreshing to step out of this clinical context and be challenged to think about the neurodiverse world we live in, and the unique contribution that each person can make.

What impact do you hope this study will have in the future? 
ALSAA is an important study for autistic adults. It will help all of us better understand the strengths and challenges experienced by  autistic adults and the people around them. I am particularly interested in ensuring we know more about how to address the health and mental health needs of autistic adults. Another area of great interest for me is the concept of healthy ageing, and how we can ensure health and wellbeing well into later life. It is important that society gains a better understanding of what autism is and what it can mean for an individual and a family. I hope the findings from ALSAA help invoke changes in awareness in attitudes and improve the experiences and wellbeing of autistic adults. 

Something about you?
I enjoy my work immensely and feel privileged to lead a dynamic team here at 3DN who share our mission to improve health policy, practice and supports for people with an intellectual or developmental disability. When not at work I enjoy spending time with my wife and children, my church community (I am a committed Christian). When time allows, I also particularly enjoy pushing my body to its physical limits in a variety of sporting and outdoor pursuits.
 

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

Kind regards, 

Kitty, Jane and Julian

The ALSAA Research Team