DIRECTOR’S REPORT

Welcome to our Spring 2021 edition Welcome to yet another Newsletter from lockdown! It is, however, good to welcome the Spring weather here in Melbourne following a long and grey winter. Just as with the National and State plans, we have a University plan that hopefully sees at least some of us returning to campus in early December. I am writing this report on the day of the highest number of cases yet reported in Victoria since the beginning of the pandemic in 2020.   Although we have been unable to progress our child research with young children, our research focused on adults has continued, with one recent paper led by Senior Research Fellow Dr Hedley addressing whether COVID-19 has increased suicide risk in Australian autistic adults. The findings suggest that while the impact of the pandemic may be associated with poorer wellbeing and higher depression, it was not associated with suicide risk in a sample of 111 autistic adults aged 20 to 71 years.  Another paper that is bound to attract attention was published by PhD scholar Jane Mantzalas, who is investigating autistic burnout. She aims to understand the symptoms of burnout and its impact on the lives of autistic people in order to assist with prevention and recovery.   Our efforts to attract autistic scholars to study with is being rewarded with four autistic PhD candidates currently undertaking their research with us. This effort is boosted by the annual Sylvia Walton Honours Scholarships for autistic undergraduates, generously funded by our Advisory Committee Chair, Dr Sylvia Walton. We have increasing numbers of students coming to La Trobe because of our focus on autism.     Staff Award Dr Megan Clark received the Margot Prior award for the best oral presentation at the ASFAR Futures of Autism Research Conference hosted by Griffith University for her presentation titled “Child and parent reported strengths, positive attributes and interests of children on the autism spectrum: Is there alignment?”    Student Success PhD student Lyndel Kennedy represented the School of Psychology and Public Health in the University Final of the 3 Minute Thesis competition. She had already won the regular and the People’s Choice award in the College heats. PhD student Eva Laurent (supervised by Prof Amanda Richdale) had her PhD thesis passed. Her topic is “Cognitive Profiles associated with STEM occupations in autism: Is there really an autism advantage?”.   Autism@Work Summit OTARC sponsored this Autism CRC event, held on 24 August, and Dr Simon Bury presented on supporting the wellbeing of autistic employees.   I hope you will enjoy reading our Newsletter, and I especially hope that our next Newsletter will come to you from outside of lockdown! Cheryl Dissanayake, PhD, MAPS, INSAR Fellow Director & Chair, Olga Tennison Autism Research Centre

Promotional Assets for Mental Wellbeing and Suicide Prevention Autism…

Thank you for helping us promote this Australia-first conference bringing together professionals and attendees with lived experience to address the critical issue of mental health and wellbeing in autism. Below you will find resources to use across social media and in direct communication with your members and contacts.

For more information, please contact:

Melinda Denham, Communications Coordinator, m.denham@latrobe.edu.au
Dr Darren Hedley, Conference Convenor, d.hedley@latrobe.edu.au

Content Pack – messages and how to use

This Word doc contains all the information you need to promote the conference, including key dates, speakers, messages and hashtags

Email flyer

• PDF One-page Flyer – for use in email campaigns

Social Media Images

• Facebook Tile image

• LinkedIn Tile Image

• Twitter post Image

Mental Wellbeing and Suicide Prevention in Autism – Conference

Date and time

Thu, 9 December 2021

9:00 AM – 5:00 PM AEDT

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Location

Book now, to reserve your place.

Research Study: Factors Contributing to Higher Education Success

Lyndel Kennedy, PhD student at La Trobe University is seeking volunteer research participants to be involved in a study about the higher education experiences of students in Australia and New Zealand.

I’m wanting to learn more about the predictors of success, and barriers to accessing supports for students with, and without, neurodivergent conditions, such as Autism, ADHD and dyslexia. It is expected that this research will contribute to improving the supports provided to neurodivergent students in higher education, and thus increase their opportunities to succeed in their education.

Would the research study be a good fit for me?

The study might be a good fit for you if:

• You are currently enrolled at a university, technical and further education (TAFE), institute of technology and polytechnic (ITP) or post-secondary college in Australia or New Zealand, (currently studying or deferred) or
• You have studied at a university, technical and further education (TAFE), institute of technology and polytechnic (ITP) or post-secondary college since 2015.
• You are aged 18 years or older

What would happen if I took part in the research study?

If you decide to take part in the research study, you would be asked to complete an online survey, using your own computer, which would take approximately 30-45 minutes of your time.

Will I be paid to take part in the research study?

There are no costs associated with participation in this research study, nor will you be paid. However, you may choose to enter into a one-in-five chance draw to win an AUD$25 (for Australian residents) or US$20 (for New Zealand residents) Amazon gift voucher on completion of the survey.

To participate:

Click here to access the online anonymous survey: https://redcap.link/latrobe.HENDS

For more information:

Name:	Lyndel Kennedy
School/Department:	OTARC, School of Psychology and Public Health
Email:	L.Kennedy@latrobe.edu.au
Ethics Approval Number:	HREC210027

‘Autism research chose me’: OTARC’s Deputy Director Prof. Alison…

Professor Alison Lane (formerly of the University of Newcastle) has recently joined the staff of OTARC as Deputy Director. In this position she will be responsible for research leadership, early career mentoring, as well as progressing her own research program on sensory profiles with a focus on the infant and toddler years.

A career with a dual focus

A generalist in paediatric occupational therapy, Alison spent the early part of her career as a clinician focused on helping children with learning, movement and medical issues. Over time, much of her practice and that of her OT colleagues became dominated by children and families seeking practical help for sensory issues linked to their autism diagnosis. At the time, a majority of the therapy options available for these children lacked an evidence base to support them but the demand for services was immense. So, Prof. Lane started to think about the best way to help the greatest number of these children. Around this time (2004), she met a colleague from the Pharmacy department at the University of South Australia who also happened to be the parent of an autistic child. Alison was asked to join the multidisciplinary working group she was founding, which had the aim of improving services and of researching therapies for autistic children.

Fast-forward 15 years, and Prof Lane has an established career with a dual focus – that of clinician and researcher. In her most recent role, before joining OTARC, she was both a Clinic Director and the Head of a research team. Her research is primarily focused on recognising the different sensory profiles of autistic children, their functional impact, and their accompanying developmental trajectories. The ultimate aim of classifying autism via sensory profiles is to introduce a more systematic approach for targeting therapies towards those children and families most likely to benefit.

Changes in autism research

When asked what has changed in autism research in the past 15 years, Alison makes the point that there were hardly any interventions for autistic children, let alone interventions that had evidence behind them. It is not only the number but the kind of interventions that have expanded in recent years. As well as well-known behavioural therapies, there are now several other kinds of therapies with developmental, sensory and relationship (parent-mediated) foundations.

These changes mean that the clinical landscape now has more scope for individualised attention in that there is both a wider variety of interventions, as well as more individual choice in selecting from the range of therapies (thanks in part to schemes like the NDIS). Prof. Lane’s work seeks to help families identify which therapies are most likely to work for them and their children.

In the last three to five years, Alison has seen improved acknowledgment of the importance of interactions between autistic individuals and researchers, particularly in the realm of co-production of research. When asked if she can provide a specific example, she replies with an interaction she says was formative – where a parent in a lab-based experiment provided critical feedback on giving detailed instructions in advance of the clinic visit. Since then, Prof. Lane has always tried to design studies and develop research information materials with the perspective of the parent and young autistic person front of mind, and consults families regarding the acceptability and importance of the research.

What attracted you to OTARC?

“I was working in a role that had a typical split for allied health in universities: a bit of teaching, a bit of clinical practice, and research squeezed into whatever time I had leftover. Seeing the dedicated research role at OTARC really piqued my interest, as this opportunity to have such a singular focus is rare in my field. The leadership aspect appealed to me too, especially since I have had professional interactions with many OTARC researchers previously and know what a dedicated and professional team they are.”

Senator Pays Tribute to Mrs Olga Tennison in Parliament

Senator Hollie Hughes (NSW) delivered a speech in Federal Parliament on 7 October 2020, paying tribute to OTARC’s benefactor Mrs Olga Tennison OAM.

As the Chair of the Senate Select Committee of Autism, Senator Hughes has a professional interest in the topic. However, she also shares with Mrs Tennison the situation of having a family member with autism. Describing Mrs Tennison’s early life, she noted that Mrs Tennison’s interest in autism was triggered when her grandson was diagnosed with Asperger’s disorder at 12. What follows are some edited excerpts from her speech.

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“I have an autistic son. When my child was diagnosed, the grief and challenges that I faced as a parent were in trying to discover what therapies were the best options to undertake, where to turn, where to get assistance and where to get support. That’s incredibly challenging and incredibly difficult; it was nine years ago and it still is today.

It’s the work of organisations such as OTARC that has provided so much comfort to families like mine— especially in Melbourne, where they’ve worked on studies.

You don’t know how [your children are] going to leap forward and you don’t know how they’re going to develop, what success is going to come or where they are going to end up falling on the spectrum—that will move throughout a child’s life—but we do know that the earlier the intervention and the more intense and better the quality of the intervention then the more successful the outcomes are going to be.

I know that my experience has been mirrored by so many Australian families. Most people…would know someone whose family has been affected by autism—someone who has a child on the autism spectrum or who is on the autism spectrum themselves. So many Australians are affected both directly or indirectly, but, thanks to people like Olga Tennison, there’s comfort and hope.

Mrs Tennison’s voice as someone with a close experience of autism gives her authenticity to speak on behalf of the centre and promote the work that’s being undertaken, of which she is incredibly proud.

Many Australian families, I know, would like me to say on their behalf that it is with great gratitude that we acknowledge the amazing philanthropic donations that enabled the Olga Tennison Autism Research Centre to be developed in the first place and that enable the work that it continues to undertake. So it’s my great honour to highly commend Olga Tennison for her sincere charitable efforts and to record our deep and sincere gratitude for posterity.”

Autism Honours Scholarship Recipients

The Sylvia Walton Scholarship for autistic Honours students (established in 2019) has now enabled 3 dedicated students to begin their research careers. We interviewed Kate Gore, Helen Andrews and Lauren Sargeant to find out their connections to autism, their personal philosophy, and how the pandemic has affected their year.

Kate Gore

What is your connection to autism?
My interest was first sparked when my eldest son was diagnosed with autism in 2010. I read a lot of material about autism at the time and was also very well supported by the psychologist who diagnosed my son. As time went on, I became curious about myself and sought my own diagnosis. I then felt a strong pull to contribute to help other autistic people and being able to conduct research with OTARC alongside my study of psychology seemed like a great way to do this.  

What is the biggest challenge you’ve had to overcome to begin your research?

I tend to get very focused on moving forward in linear fashion and making regular progress towards my end goal, whereas my experience with research to date is that you need to engage in dialogue with your supervisors and other experts. This dialogue can then lead to you changing your approach or going down a different path. Initially I found this lack of certainty difficult and a little discouraging but I am learning to appreciate that it is part of the process and leads to a better outcome.

Do you have a personal philosophy that you bring to research?

I try to remain really curious in my research. I think that autistic people are really remarkable and I try to let that anchor me in my approach so that my research will try to uncover strengths and achievements as well as opportunities for better support.

How has the pandemic affected your year?

It has been hard at times, I have studied Masters of Clinical Psychology which has included my new Master research project with OTARC. I had expected a year where I could deep dive into my topics of interest, instead I have had to share my study space with home schooling three children and my husband. At first the noise and lack of alone time was tough for me, but I worked through some different strategies to recharge myself. I am really proud that I have got through my first year of Masters and look forward to next year.

Helen Andrews

What is your connection to autism?
My nephew and son were diagnosed with autism at the age of three and watching them overcome challenges throughout the years (my son is about to turn 19 and his cousin is 21) has opened my eyes to the daily experience of autistic people and their families. Having become familiar with the diverse symptoms of autism through support groups and research, I realised that I am probably also autistic, although I have not been diagnosed.

What is the biggest challenge you’ve had to overcome to begin your research?
The biggest challenge for me has been financial. I spent five years caring for my mother who was chronically ill and trying to return to the workforce in my late 40’s after such a long break has proved challenging. Then along came coronavirus, and the job market became even tighter. Receiving my scholarship was like a miracle.

Do you have a personal philosophy that you bring to research?
I’m not sure that I have a personal philosophy, but I do believe in trusting my instincts. My non-conscious brain seems capable of organising information and making intuitive links much better than my conscious brain, so I don’t push too hard to rush that process.

How has the pandemic affected your year?

I was looking forward to being on campus, as I completed my undergraduate years online due to caring responsibilities for my mother. Unfortunately, I got to attend only two days on campus before everything was shut down.  So that was a bit of a disappointment.

Lauren Sargeant

What is your connection to autism?
I am autistic. I was diagnosed when I was 26 years old, but I suspected I was autistic for about 10 years prior to this. One of my autistic special interests is autism and I love reading autism research in my spare time. When Professor Cheryl Dissanayake invited me to do my thesis research within OTARC, I was very excited and enrolled at La Trobe university straight away. I look forward to contributing to the field of autism research as an autistic researcher.

What is the biggest challenge you’ve had to overcome to begin your research?

I am prone to autistic burnout and co-morbid mental health issues. As such I have had to defer my studies a couple of times to take care of my mental health. Keeping up with my studies while practicing self-care has been a challenging learning curve. I made the decision to study my Honours part-time over two years and I think it was a very wise decision as my mental health has been the best it has ever been this year, despite the pandemic. Studying part-time has enabled me to dedicate extra time to self-care activities and still achieve the grades I was aiming for.

Do you have a personal philosophy that you bring to research?

I subscribe to the strengths-based model of psychology and the social model of disability. This informs my research practices in that I see autism as a neurodiversity rather than a pathological deficit. I believe this approach is more respectful to the autistic community and provides hope for the possibility of inclusion and social change.

How has the pandemic affected your year?

My wife lost her job, so this scholarship brought us some much-needed financial relief. It could not have come at a better time. Besides the financial implications, the pandemic has not impacted my year as severely as it affected others. I was looking forward to studying on campus for the first time (I did my first three years online) so it was disappointing to not be able to network in the way I had intended but I am thankful for my physical and mental health this year.

Director’s Report Sept 2020

What a relief that Spring is upon us! It is especially welcomed by us Victorians who have had to endure Stage 4 restrictions due to the second wave of COVID-19. At OTARC, as elsewhere, families have been hit particularly hard with juggling care and home schooling their children, including autistic children, and work. COVID has also claimed a pioneer of autism research, and inaugural Chair of our Advisory Committee, Professor Margot Prior, who is sorely missed. You can read our obituary about an amazing leader, mentor and friend, who leaves an impressive legacy for us to uphold.

Senate Inquiry Into Autism
The Senate Committee Inquiry into services, support and life outcomes for autistic people is now underway to which OTARC made a submission, which you can read about in more detail below. Our Vice Chancellor, Professor John Dewar, and I had the pleasure of meeting with the Senate Committee Chair, Senator Hollie Hughes. Being a mum of an autistic teen, it was clear that Senator Hughes felt the relevant issues keenly, and which are so in need of being addressed. Having also participated in the Victorian Parliamentary Inquiry into Autism in 2016, I am hopeful that the learnings from the latter initiative will be leveraged to take us even further than the 101 recommendations put forward in the report (PDF of report here ). Sadly, as with most things, the Victorian Autism State Plan appears to have lost traction, another casualty of Covid-19. Hopefully this will be revived in the not-too-distant future.

INSAR News
As Vice President of the International Society for Autism Research, I have been attending the annual INSAR Strategic Planning meeting which was meant to be held in Washington DC. Instead, the meeting is being held virtually, just like every other meeting since March 2020! We spent a considerable amount of time discussing the Black Lives Matter initiative, and how best to increase the number of Black autism scientists around the world, and to also increase diversity more generally. We have, thankfully, seen an increase in global participation at INSAR, a necessary first step. In my role, I am Board Liaison for a number of Committees, including the Autistic Researchers Committee who had their first event (also online) with over 150 participants, another recent achievement of INSAR. Below you will read about the achievement of one of our own autistic researchers who made the finals for the La Trobe 3-minute thesis competition. Congratulations Beth!

ASfAR Virtual Conference in December
In light of the New Zealand-Australia travel bubble not progressing, the Australasian Society for Autism Research (ASfAR) biennial conference will now be held virtually in early December. There will be good representation from OTARC at this meeting. I have been Vice President of ASfAR (another initiative of OTARC facilitated by Professor Prior) since its establishment in 2011. I plan to step down from this position at the AGM which will be held during the conference. We will bring you another newsletter following this meeting, where I can hopefully share with you the success of our first virtual ASfAR Conference.