The Australian Longitudinal Study of Adults with Autism (ALSAA)
December 2018 Update
Seasons greetings everyone!
We present to you a special festive edition with a focus on the new diagnostic guidelines! So, get ready for season’s greetings
and some thoughts on surviving the holiday season
, a feature on the new diagnostic guidelines
for autism spectrum condition, a recap of the latest ALSAA publication
and conference presentations
, a comment on the latest NDIS quarterly report
, the university shutdown
dates, various Autism research opportunities
and an opportunity to be part of a documentary series
. As always we end with a new team member profile
– Yunhe Huang
. It's a long one! We hope you all have plans for a relaxing and joyful break over the holiday season.
New National Guideline for the Assessment and Diagnosis of Autism
We hope you are looking forward to a happy and relaxing time over the holidays, for those who get a break. For those who keep working, we hope you can find a moment to relax in the chaos that can be the festive season. As we have said in the past, it’s important to recognise that the holiday season can be a tricky and stressful time for many of us. For this reason, last year we shared this guide to surviving the festive season
, this year we decided to share these tips for autistic adults
, compiled by autistic adults. These come from the UK National Autistic Society
, so unfortunately whilst we don't have many double-decker buses from which to get a birds' eye view of the fairy lights displays, many other tips are helpful. Most important, they suggest to plan ahead and share what is important to you with those who you will be with during the holidays.
The community has been requesting a national, consistent guideline for autism assessment for some time now, to avoid the great variability in diagnosis between locations and clinicians. The National Guideline for the Assessment and Diagnosis of Autism, a two year project undertaken by Autism CRC and supported by the National Disability Insurance Agency (NDIA) has recently been released. You can access the full guidelines here.
The purpose of the guidelines is to support clinicians who undertake assessments for an autism diagnosis. It is not designed to replace criteria for an autism diagnosis, but to provide a framework on how to assess the criteria. The guideline outlines the complete process for assessment and diagnosis, from the time of the first referral through to the communication of the results. The guidelines recommend a two-step process of a comprehensive needs assessment, and then a diagnostic evaluation.
"A diagnostic assessment is not simply about determining whether a person does or doesn’t meet criteria for autism. Of equal importance is gaining an understanding about the key strengths, challenges and needs of the person. This will inform their future clinical care and how services are delivered" commented Professor Andrew Whitehouse
, Chief Research Officer at the Autism CRC.
With the release of the guidelines, it is hoped that procedures for diagnosis in Australia will be more consistent and streamlined. Our own PhD student, Yunhe, featured in this newsletter, is also undertaking important work looking at diagnosis of autism in adulthood. For more information on her research, feel free to send her an email at email@example.com
Latest publication using ALSAA data - Psychotropic medication use
In other news
, we want to share with you the most recent publication using ALSAA data, by Rachael Cvejic, Sam, Kitty and Julian. The paper looks at psychotropic medication (i.e. mood-altering medication) use and can be accessed here.
Background research on this topic shows high rates of psychotropic medication use in autistic children and adults, and use of psychotropic medications for the management of behaviour despite evidence suggesting limited effectiveness of medication for this purpose. No previous research has looked at the prescribing patterns in Australia for adults on the spectrum.
ALSAA data showed a significantly increased history of psychiatric disorder and psychotropic medication use in autistic adults, who were also more than 4 times as likely to be taking psychotropic medications. The finding that is of most concern is the significant proportions of medication prescribed with no indication. Similar to overseas data, despite limited effectiveness, some autistic adults are being prescribed medication for the purposes of behaviour management.
ASFAR and PsychDD Conferences
Sam and Ashley recently had the pleasure of presenting a few recent ALSAA findings, including the findings from the medications paper mentioned above, at the annual PsychDD conference held in Sydney.
Many of the ALSAA research team also recently had the honour to participate in the 2018 ASfAR
conference held in the Gold Coast, Queensland. Attended by Sam, Yunhe, Jane and Marisse, ASfAR was a great opportunity to network with the Australian autism research community. It was pleasing to see several presentations based on ALSAA and SASLA data (i.e. our sister study the Longitudinal Study of School Leavers with Autism) that we hope will translate to publications and resources for the community in the future. Important presentations included an overview of the massive body of work behind the new Autism CRC diagnosis and assessment guidelines, as well as the launch of the Autism CRC Australian Autism BioBank
Yunhe also won the Rita Jordan Prize for Best Student Rapid Presentation, she can be seen receiving this award in the photo to the right!
NDIS Quarterly Report
The most recent NDIS quarterly report makes for some interesting reading. Our research team noticed in the report that it seems adults on the spectrum are not being recognised or adequately supported by the NDIS. The report states that children diagnosed with autism aged 7 to 14 make up 70% of the participant base. On a similar note, teens and young adults on the spectrum aged 15 to 24 make up 50% of the participant base for that age group. However, when looking at ages 25+, autistic adults only account for 10% of the NDIS participant base. Considering that autism is not something that one usually 'grows out' of, these statistics suggest that the needs of adults on the spectrum are not being recognised. More work needs to be done to better understand and support the needs of adults on the autism spectrum.
The ALSAA team will be on leave from the 19th
December returning 7th
January as the University of New South Wales shuts down for the holidays. Just in case you do start doing your Wave 2 questionnaire during the holiday season and run into a tricky question, we will do our best to help answer once we return in January.
Autism Research Opportunities
Quality of Life Study
Curtin University PhD student, Rebecca, is currently looking for adults 18-50 years with a diagnosis of autism to participate in interviews about their quality of life. Rebecca wants to know about what contributes to your quality of life, and how you view your quality of life compared to others. The interview will take 40-60 minutes. If you are interested in participating please complete the eligibility survey in the link below:
Online Health Information and Me - Now taking EOI's from Sydney area participants
Autism CRC researchers at the University of Queensland are looking at how adults on the autism spectrum with intellectual disability find health information online. The researchers want to talk to adults on the autism spectrum with intellectual disability and their support people in the Brisbane area. The researchers are now gathering expressions of interest from people in the Sydney area also.
- They want to find out how people look for health information
- They want find out what people like and don’t like about health websites
- They will use this information to make recommendations so organisations can improve their health websites
Participants will receive a $30 gift card. If you are interested in participating in this project please contact Katie Brooker on (07) 3163 8267 or firstname.lastname@example.org
Reminder to complete ALSAA Wave 2!
In the new year, you may receive an email or phone call from us to remind you to fill out your second ALSAA questionnaire, if you haven't already. Looking at how things change over time is an important aspect of our research. We are still also recruiting new participants for Wave 2. It’s particularly hard for us to recruit non-autistic males and adults on the spectrum with intellectual disability to participate in the study. If you know anyone who might be interested in filling in an ALSAA questionnaire, please ask them to participate by completing the EOI here
Documentary series featuring people on the spectrum interested in dating
Northern Pictures, who you would know as the producers of Employable Me,
now in its second series, are still calling for autistic and non-autistic people interesting in dating. More details on this flyer
Team Member Profile
New South Wales
What do you like most about working on the study?
I’ve always had a desire to understand people- how we see the world, what we think, and why we do the things we do. The world is made more interesting because there are so many different perspectives. I have also had an interest in autism since a young age. Statistics also appeal to me because I like maths. This project allows me to pursue my interests, understand people and their unique experiences, and use my skills in statistical analysis all at once, which I think is very good.
What impact do you hope this study will have in the future?
As more and more adults are receiving an autism diagnosis for the first time, it is crucial that we listen to their experiences and find ways to support their needs. My project will seek to understand people’s pathways to diagnosis, predictors of age of diagnosis in adults, comparisons between early-diagnosed adults and people diagnosed in adulthood, and experiences of support during and after diagnosis. I plan to use a combination of ALSAA data, an additional survey and interviews with autistic adults and carers. Diagnosis is better understood as a journey rather than a single event, and people’s beliefs about themselves and their diagnosis can change over time. I hope that my work in this area will help to further understand the perspectives and needs of this population, and result in recommendations for health professionals who diagnose or work with adults on the spectrum to support them better.
Something about you?
My favourite pastime is reading online reviews of mystery/thriller novels and trying to understand the plot without reading any of the novel itself. My more common hobbies are knitting and cooking.
The ALSAA research team would like to thank participants, research advisors and those supporting our work. We wish you a safe and happy festive season. As always, please feel free to contact us with any questions or queries.
Sam, Yunhe, Ashley and Julian