‘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 AO.

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.