‘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.

Mental Health, Wellbeing & Suicide Prevention in Autism

Recruitment is currently closed for this study.
For further information please contact the study team

Researchers at La Trobe University are seeking volunteer research participants to be involved in a study about mental health and wellbeing, and suicide prevention, concerning people on the autism spectrum, or who identify as being autistic. The study is funded through the National Suicide Prevention Research Fund, administered by Suicide Prevention Australia.

You can read our 2020 Annual Progress report here

Would the research study be a good fit for me?

d.hedley@latrobe.edu.au
(03) 9479 3704
https://tinyurl.com/AutismWellbeingStudy

The study might be a good fit for you if:

• You are aged 18 years or older
• You identify as autistic or you have been diagnosed on the autism spectrum
• You can read and speak in English
• You have not been diagnosed with an intellectual disability
• You have (or think you have) been a participant in the Cooperative Research Centre for Living with Autism (Autism CRC) Study of Australian School Leavers with Autism (SASLA) or Australian Longitudinal Study of Adults with Autism (ALSAA) – if you are not sure if you have been in these studies or not, please contact us and we can check for you

If you would like a researcher to contact you about the study, please follow the link to register your contact information: https://tinyurl.com/eoilatrobe

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

If you decide to take part in the research study, you would:

• Complete a short online survey
• Complete two interviews, lasting about 30-60 minutes each
• You may also be invited to participate in a third interview where we will ask you about your opinions and perspectives on mental health services in Australia.
• You do not have to participate in the second interview if you prefer not to (if you are invited, you can just tell the researcher that you do not want to do this part of the study).

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

You will be reimbursed $75 for your time to complete the online survey and first two interviews.
If you are invited to participate in the third interview, you will be reimbursed a further $45.

Who do I contact if I want more information or want to take part in the study?

If you would like more information or are interested in being part of the study, please contact:

Name:	Dr Darren Hedley
School/Department	Olga Tennison Autism Research Centre, School of Psychology & Public Health
Email:	d.hedley@latrobe.edu.au
Phone:	(w) (03) 9479 3704
Website:	https://scholars.latrobe.edu.au/display/dhedley
Ethics Approval Number	HEC20235

Director’s Report June 2020

How COVID-19 has changed our research
We are in our 15th week of working at home, and this has now become business as usual for many of us. We meet at a virtual watercooler (on MS Teams) each day, and regularly see each other on Zoom for meetings as we navigate COVID-19. There has been an uptick in cases in Victoria over the last week or so, so just as we thought we might resume research on campus, it looks like it may be a little while yet!

While there are significant challenges to continuing research under current pandemic restrictions, we have also seen some benefits. Our treatment study involving children has continued as therapists moved to delivering parent-mediated intervention remotely. The benefits of this shift include facilitating skill generalisation into the home and the reduced need to travel. Indeed, the move to telehealth and online research will be particularly beneficial for under-served communities and those living in rural and regional areas here and elsewhere, and some of our researchers are exploring this further.

Research is continuing when it can be executed safely. For example, studies with autistic adolescents and adults involving online questionnaires or interviews are progressing, albeit with fewer completions than usual. However, we are exercising caution with studies on mental health and wellbeing. Given the widespread impacts of COVID-19 on the mental health of ordinary citizens, these studies are suspended until we reach ‘normalcy,’ whenever that will be!

It is quite amazing just how much work we all do online now, which has not only enabled us to work remotely, but also to undertake more international collaboration. Our autistic researchers also tell us how much this suits them, with requirements to navigate the social world lessened as a result. Importantly, remaining competitive in this COVID-19 environment requires scientists to be nimble, resilient, strategic and innovative, which will ultimately serve to expand future contributions to society.

We Care – Parent Support FREE Online workshops

Run by Fun Lab Therapy, these online workshops are aimed at providing parents of children recently diagnosed with a disability with information and support to understand their child’s diagnosis.The sessions will include:

• Opportunities for informal chats with parents and professionals
• Assitance with navigating services to promote your child’s development and progress
• Professionals from the field with tips on ways to support yourself and your child

Please attend all three sessions;
The February sessions are FREE.

Dates

Saturdays 13 February; 27 February; 13 March – from 1-3pm

How to Register

Please email or call Dr Anoo Bhopti at a.bhopti@latrobe.edu.au or 9479 5667 or 0438 090 299.

Opportunity to Participate in Research

The workshops will be evaluated as part of a research study. If you are interested in participating, please let Dr Bhopti know. Participation is entirely voluntary.