Breaking down barriers with the 'Autistic Professor'
All images used with permission.
A few years ago, not long after Sandra Thom-Jones moved her family to Melbourne to start a new job at ACU, she cautiously approached those closest to her to ask their thoughts on the possibility that she was autistic. Sandra already knew a lot about autism – her two sons had been diagnosed with the condition – and at the time, she pondered the prospect that the thoughts, behaviours and challenges she shared with her sons were due to a shared neurotype, rather than just shared genes.
So, one day she approached her eldest son and casually asked him: “Do you think it’s possible that I am autistic?”
“Yes, I’m sure you are,” he responded. “Where do you think we got it from?”
When she asked her husband the same question, he responded equally confidently: “I’ve known that since I met you.”
Receiving this unofficial-yet-emphatic diagnosis from her loved ones was “a great relief”, says Professor Thom-Jones, ACU’s Pro Vice-Chancellor, Research Impact and the author of Growing in to Autism.
“It was a relief in the sense that having people who knew me really, really well say, ‘Yes, that makes sense. That’s how we see you,’ I guess it was reassuring. It made me feel like maybe this is who I am.”
When Sandra decided to seek out a medical diagnosis, she nervously approached her younger son’s psychologist and said, “I was just wondering … if maybe I might be autistic.”
As she stood there at the psychologist’s door, she held her breath, waiting for him to laugh. Instead, he surprised her and replied: “You mean you don’t have a diagnosis already? I had assumed … In my notes I have written ‘Mother is autistic’.”
Weeks later, Sandra Thom-Jones finally had a formal autism diagnosis. This was life-changing for the woman who had always known she was different but didn’t quite understand why.
“Having a lifetime of being told that you’re not getting it right and feeling like a faulty human being, to have someone say officially and formally, ‘No, you are not a faulty human being. You are this category of human being and you are perfectly fine being this category of human being,’ it was a life-changer,” she says.
“Suddenly, it was okay that I was different, and that was huge because it gave me the confidence to start changing the things around me that had made my life so hard.”
It would be fair to say that Sandra Thom-Jones made an impact at ACU long before she built a public profile as the author of a popular book.
In recent years, she has been the driving force behind the university’s ground-breaking autism inclusion and research program, Autism at Uni.
The program has many moving parts, with a focus on research and advocacy, resources to increase public understanding and acceptance of autism, and initiatives and supports to help autistic students thrive.
Autism research posters
“The overall goal is to create a more inclusive and welcoming environment for autistic adults at the university and in the community more broadly,” says Professor Thom-Jones, who has won accolades for translating autism research into practice.
As part of the program, her team recently produced a range of videos for the ‘Autistic Voices’ initiative, designed to give insights into the reality that each autistic person is an individual with different interests, strengths and challenges.
It includes a discussion with Jennifer Lowe, a research associate at ACU who was diagnosed with autism at the age of 30 when she was midway through her doctoral thesis. In the interview, Jennifer describes the diagnosis as “a huge relief”, and says she was comforted by the sense of belonging she felt with others in the autism community.
Similarly, when Professor Thom-Jones received her diagnosis, she relished the opportunity to network with people whose experiences mirrored hers.
“I’m generally not a huge fan of social media, but I did join a few autistic Facebook groups and it was one of the really powerful things,” she says.
“It was amazing to go on there, and people would post things like, ‘Does anyone else feel like this when this happens?’, and thousands of people would respond, ‘Yeah, me too!’ And I’d think, ‘Oh, wow! I’ve found my people. In this group, I’m just so completely and absolutely normal’.”
Professor Thom-Jones’s work in the autism research and advocacy space was largely born out of her own experience as a mother of autistic people.
“I was a parent of autistic adults before I knew I was autistic, and for me, as with many parents of autistic people, the thing that was an absolute shock was what happened when my children finished high school – and what happened was basically nothing,” she says. “We went from having services and other supports around them to having nothing, with this expectation that they would just cope like everyone else and go to university or get a job, and if they couldn’t, they could stay at home.”
While she notes in Growing in to Autism that both of her sons have grown to become “wonderful young men”, boasting many talents and achievements, for many other autistic people, thriving in adulthood can be an uphill battle.
Government data shows that 34.1 per cent of autistic people are unemployed – three times higher than the unemployment rate of people with any type of disability, and almost eight times that of those without a disability.
“That’s not a capacity issue, and it’s not due to an inability to undertake work – it’s due to stigma and a lack of understanding and a lack of support for autistic people,” she says.
Professor Thom-Jones at her book launch.
“There are so many simple things we could do to make higher education and employment more accessible to autistic people. I have this little dream, this little goal, which is just to use research and advocacy to level the playing field and make our education systems and our employment systems inclusive.”
The final chapter in Sandra Thom-Jones’s enlightening memoir is devoted to a topic that often gets overlooked when discussing autism: the strengths of autistic people.
The professor admits that writing the chapter was difficult; emphasising her own strengths seemed a tad too egotistical.
It can also be hard to nail down the specific strengths of autistic people without falling into the trap of feeding stereotypes.
“People think that autistic people are all adolescent middle-class white boys that are nerdy, maths-obsessed computer geeks – and there are certainly standouts in the IT industry, which has long realised how valuable autistic employees are – but every autistic person is different,” she says.
Rather than drawing on her own strengths, Professor Thom-Jones emphasises the key areas where autistic people commonly outshine non-autistic people: a strong moral compass, a commitment to knowledge and learning, and a comfort with rules and routines, to name a few.
“I think we bring a lot of strengths in many different areas, and that’s why I get frustrated with people who say, ‘Autistic people shouldn’t be nurses, doctors, psychologists or teachers because they don’t have great people skills’.
“Okay, so maybe we don’t know all the right words to say and we don’t always have the right facial expressions, and we might not be all smiley and touchy-feely, but I tell you that if you’ve got an autistic nurse, teacher or doctor, they will go over and above to make sure you get the best outcome and the best solution because they will want you to do well and achieve.”
As for what she hopes readers will take away from her book, Professor Thom-Jones says she’d like to give non-autistic people a sense of what it’s like to be autistic.
“I’d like them to come away with a bit more understanding, and a desire to be kinder and gentler towards autistic people,” she says.
For those readers who are autistic, she hopes it will give them the confidence to be themselves.
“I hope it helps some autistic people to feel comfortable with themselves, to reach out and talk to other people and feel less alone. I guess the message I’d like to convey is, ‘Hey, you’re doing a good job of living in this world because this world wasn’t really built for you, and you’re not faulty or damaged, you’re just you, and it’s okay to be you’.”
Find out more about Autism at Uni at Australian Catholic University.
Check out Professor Sandra Thom-Jones’s personal website, ‘Autistic Professor’ and find out more about Growing in to Autism, published by Melbourne University Press.