“Together we can create a kinder, more inclusive world.”

This year’s theme of Autism Awareness Day on April 2nd is aiming to increase the understanding and acceptance of people with autism. 

We recently spoke to Dr. Sophia Frentz who is on the autistic spectrum and they shared their daily experiences and challenges in times of COVID-19 and their thoughts on how research would have to change to embrace diversity. 

Q. Please tell us about your area of research. How and why did you enter the field?

My background and research focus have predominantly been in genetics, although I've moved to technology since then. The reasons for both of these fields are the same: I'm interested in the rules that make up our world, whether those are the encoding of genetics and how your DNA interacts with the environment to create living beings, or whether that's how computer code shapes and nudges our everyday lives.

In my final year of high school, I represented New Zealand in the international biology olympiad, and that was what pinned down genetics as the area in which I wanted to major. I attended the University of Otago (in Dunedin, New Zealand) for four years, getting a BSc (Honors) in Genetics. During my honors year, a case study I was working on meant I became very interested in mitochondrial function, and how the mitochondrial and nuclear genomes interacted in disease. Mitochondria are the powerhouse of the cell, and they create the energy you need to survive. They've got their own genome, but a number of genes critical for mitochondrial functioning are found in the nuclear genome as well. My PhD (at the University of Melbourne) investigated a particular type of mitochondrial disorder, tested potential treatments, and worked on developing new models that would improve how we tested treatments. This work is particularly important as there aren't any meaningful treatments for most types of mitochondrial disease currently.

Something I really value in my life is stability, and the career path of an academic did not sound good to me! Following my PhD, I worked at Deloitte as a technology consultant for two years, working in projects across finance, government, and more. I've recently begun a role at Eliiza as a Data Consultant, and am finding the more hands-on technology work to be the kind of intellectual challenge I crave. So, while I don't do "traditional" research now, I'm usually thinking and analyzing concepts and developments in a similar way to during my time in research.
 
Q. What does your day look like in times of COVID-19?

Right now, we're all working from home to try and flatten the curve!

My day usually starts around 8 AM, where I read emails and messages, make a coffee, and plan my day. I'm working on a publication in the area of machine learning right now, as well as some internal developments I can't really talk about (sorry!) I'll divide the work I want to get done during a day into chunks and work through them one by one. I've set my Fitbit to go off every hour to remind me to have a walk around my apartment and take a breather for five to ten minutes - otherwise, I'd absolutely hyper focus and get lost in tasks.

 I try to have a few video conference calls throughout the day, either for meetings or just to chat with colleagues. It's difficult to stay connected and feel like I'm on the right path, especially as a new starter, but Eliiza has been excellent at figuring this out together. I'm trying to be pretty strict with my time, as it's very easy to let work bleed into everything when you work from home, so I'll usually tie up at around five or five-thirty. Some days, if there's been a lot of meetings or a lot of new information, I'll also need to take a break at around 2 pm and just lie down quietly for fifteen minutes.

After that, I'll do some yoga and make dinner. I'm trying to get a good amount of exercise every day, which can be difficult when you're mostly staying inside. In the evenings right now I'm playing the new Animal Crossing game! It's a good distraction from everything else.

Q. What impact are you hoping to make with your work?

Broadly, all of my work aims to make the world a better place. Eliiza is extremely involved in the Responsible AI community, and with AI influencing increasing amounts of our physical and digital worlds, I hope that our work - and my work as part of that - guides these amazing technologies to a place where they can benefit all of humanity.

Q. What is the most challenging area of your work? And what is most rewarding?

Right now it's challenging to be separated from everyone. I am good at reading a room, and right now I don't have all the additional information that being in the same room as someone can give you. It feels like a blind spot, and as much as video conferencing can do, it still doesn't quite replicate that experience.

It's rewarding to see people's lives get better. I haven't been at Eliiza long, but even reading through our previous work it's clear that we're improving the lives of our clients, their employees, and their customers. Even at Deloitte, the best moment was when a new program or platform was launched that made people's lives easier.

Q. As a researcher on the autism spectrum, what biases or challenges do you face and how do you handle those? Where do you think you have an advantage? 

People hold stereotypes about autistic people, and navigating the balance between contesting those and having my needs met can be extremely difficult. One of my strengths is that I'm really good with people, but telling people too early on that I'm autistic can mean I never get to be in situations where I can shine. I can get overwhelmed in very busy places easily as well. Before being diagnosed with autism, I thought I had social anxiety because of how I felt around large groups of people! The biggest skill that is an advantage is hyper-focus - the ability to drop completely into a task and work until it's done. 

Q: How would research have to change to embrace diversity in its entirety?

Oh boy. It'd need to change a lot.

For some institutions, there isn’t a strong enough driver to enact change. When only certain groups of people are let in and rewarded, we not only suffer in our society but in science, too. We need a more diverse view of science – it can’t only be from white, cis-gender, able-bodied men. Morality isn’t always the first priority for institutions and when that is true, you don’t get change. 

An idea I've heard a lot during my time in science is that the old guard will fade and things will get better. But then a different new guard will follow along and the status quo continues.

One change, then, has to be changing the drivers on research institutions. You're starting to see this a bit with the Athena Swan program in the UK and Australia - the goal of this program is to start tying funding to the gender diversity of research institutions and groups, but we need more than just gender diversity. We need scientists to reflect on the people they do science for.

Another core change that research needs is to ensure that the appropriate education and training is in place, to help people at all levels of research institutions embrace diversity - and to encourage diverse people to stay in research. Something that's difficult with this change is that some people at the top actively benefit from how things are now, even if it would improve the quality and output of their organization.

Also, just write a code of conduct for your conference. It's so easy, and it meaningfully improves safety and comfort for a lot of people. Just write it.

Q: What was your best experience being a scientist?

Teaching! I worked with the University of Otago at Hands-on Science one summer a few years ago. Hands-on Science is a program that exposes high school students to a range of university science courses over a week. Seeing students learn, grow, and be amazed was so rewarding, and I'm still in touch with some of the students we had through. That experience was particularly special because I attended Hands-on Science when I was in high school, so it really felt like I was passing on the torch to future scientists.

Thanks for sharing your thoughts Sophia. 

Wiley and our partners are proud to present research that is helping to realize the many talents of individuals with ASD and how society and the workplace are richer when we value neuro-diversity and inclusion.

Check out our World Autism Day site to find out more.