Getting a PhD with an autistic brain

We’re sitting at the table in the office of Paul Van den Hof, professor in the Control Systems group at the department of Electrical Engineering. Seven years ago, his PhD candidate Lizan Kivits wouldn’t have been able to sit here as calmly as she is today. Paul’s bookcase proved to be a real mind-breaker, says Lizan. “All those different dissertations and books. Varying in size, font, and all sorts of colors mixed together. It caused chaos in my mind. All I could do was try to organize things in my head, making it impossible to keep my attention on a conversation.”

As of a week ago, Lizan may call herself a doctor. Her defense was conducted with much conviction, Van den Hof tells us afterwards. “She even constantly engaged with the audience and the committee members. All credit to her.” It is a stark contrast to how things were seven years ago. Her PhD supervisor and mentor Paul Van den Hof had some doubts when Lizan first came to him for a research project meeting, he stresses. “The conversation didn’t flow very smoothly; I found it difficult to gauge her. However, content-wise, I did notice that she had outstanding capabilities.” What he didn’t know at the time is that Lizan has autism.

Eyeopener

It was in secondary school that Lizan began to realize more and more that she was “different” from her classmates. “I didn’t understand why two passing teachers in an empty hallway would say “Hi!” to each other. That was an eye-opener for me. It turned out that communication is much more than just asking for help when you have a question you really can’t figure out. And even then, I set the bar very high for myself. I didn’t talk much and preferred to do things alone, but I was still part of the class.”

It takes a lot of energy for her to socially keep up in a world she often doesn’t understand. Around the age of 16, she was diagnosed with autism; through hard work she obtained her pre-university education (VWO) diploma. She soon realized that she wanted to pursue a technical degree. “I checked out various programs, but when I attended the “Systems” lecture during one of the experience days at the department of Electrical Engineering, I was absolutely sold. Using a formula to describe all kinds of different systems, I thought that was wonderful.”

Different, but not wanting to be different

“A real go-getter who doesn’t want to be different at all,” is how Paul describes Lizan in a few words. The two of them have built a special bond along the way. Even during our conversation, he finds ways to slow Lizan down very naturally every now and then, allowing her mind to relax after a particularly difficult question. “I soon got the impression that Lizan could pick up research that others around here could not. A great opportunity. But I was also faced with a difficult decision once I learned about her background. Would Lizan be able to handle a PhD track, and just as importantly, would I be able to supervise her? I give my PhD candidates lots of space, I also need that myself in order to do a good job. How could I incorporate a tight schedule and clear agreements into my busy schedule, and did I feel comfortable with that?”

Shower faucet

They decide on a trial period of a little under a year, to see if an actual PhD track is feasible. At first, it was mostly a lot of talking to learn from each other, says Paul. “We all know the characteristic traits of autism. But everyone is different, even if you have autism. In order to provide Lizan with a safe environment, I felt it was important to know what’s going on in her head.”

Everyone is different, even if you have autism.

Professor Paul van den Hof

Lizan tells him about the filter that is missing in her brain. That this makes it difficult for her to control that brain in certain situations because it is so busy processing stimuli. And that she literally shuts down when there are too many stimuli because she has no brain capacity left to function properly. That over-stimulation can occur on many different levels, Lizan explains. “Once, I was in the shower for hours. The sound of the water hitting the shower floor was too distracting, which meant I had to think long and hard about every next move. Now, I turn off the faucet when it becomes too much.”

Exercising during lunch

In addition to providing her with a place to retreat in the form of a meeting room and a part-time appointment, Paul helps her with her communication skills. “Her mind would go into overdrive whenever someone asked her ‘Hey Lizan, how are you?’ She would panic. What do they mean by that, what should I answer? We tried to improve communication step by step. Also in the group, to get to know each other and to learn how best to interact. And we had a few conversations with the Regional Autism Center, which guides Lizan.”

All this pays off. In a calm environment and with clear agreements, Lizan starts to perform better and better. In between, she uses her passion judo to blow off steam, and every day around lunchtime, she can be found in the gym at the SSC. Paul is impressed with her work. Next on the agenda is the annual Benelux conference in Soesterberg, where PhD candidates present their work.

“At the start of her trial period, I had discussed this with colleagues; we couldn't picture Lizan appearing before a large audience. Again, we started practicing step by step. It was a little scary and out of her comfort zone, but she gave an excellent presentation.” Lizan nods. “Especially the questions afterward were a big deal for me. When the questions are too open-ended, I start running around in circles in my head and I can’t make sense of things anymore.” Paul adds: “She then learned that presenting means interacting with your audience. Some time later, at the beginning of another presentation, she threw a question out to the audience herself. She was like a whole new person.”

When the questions are too open-ended, I start running around in circles in my head and I can’t make sense of things anymore.

Lizan Kivits

From Stockholm to Nice and Mexico

And so, Lizan’s trial period is turned into a longer research trajectory; he doesn’t want to call it a PhD position yet. The department provides partial financial support. “We’ll see how it goes,” Paul keeps telling her. Writing a dissertation of her own still seems a long way off. But then, her first article is accepted for a conference in Stockholm; surprise all around when she announces her intention to present there herself.

Stockholm is followed by Nice, and eventually even a conference in Mexico. “We used the same approach,” Paul explains. “A few weeks beforehand, we sat down together and sketched a detailed outline of what would happen on those days. An intensive process, especially when it was her first time traveling by plane. What happens at the airport, how does security work, what’s it like on the plane itself? Mexico was a full week, and there was a considerable time difference. We made clear agreements beforehand: I’m not there to hold your hand, but I’ll keep an eye on you.”

Broken lamp

He turns to Lizan for a moment. “Remember when you went to the hotel reception yourself to ask for another lamp? Lizan laughs. “I really wouldn’t have dared to do that before; it would’ve been too complicated. Even just getting a new notebook from the secretariat used to be a bridge too far. But the people around me noticed that I was becoming more and more free. After Mexico, I even went on vacation by myself for the first time.”

According to Paul, this is also because Lizan is always pushing her boundaries and wants to learn how to handle certain social limitations. “You have a very good understanding of your situation, and that means you also have an idea of how that works for others. By taking a critical look at yourself, you’ve allowed yourself to move forward tremendously.”

Proud

It has been an amazing journey, they both agree. Of course, there were some setbacks along the way. On several occasions, Lizan was forced to take a step back because she couldn’t manage her energy levels well. For example, when she got bogged down in her research approach. Or when the transition to assisted living asked too much of her; and the readjustment after the Covid-19 period. But also smaller obstacles, like the email from the secretariat to the whole group about the upcoming move and new room arrangements, which led to utter chaos in Lizan’s mind. And every single time, Lizan and Paul worked out together how to overcome these obstacles.

Lizan is very proud of what she has achieved now, but so am I.

Professor Paul van den Hof

Paul: “Lizan is very proud of what she has achieved now, but so am I. Seeing her personal and professional growth has been truly remarkable. It gives an incredible sense of satisfaction. This was absolutely not predicted beforehand, but the right environment can have very positive results.” And it also gave him new insights, Paul confesses. “Due to the absence of the standard obligations within a PhD project, we were able to work in a very relaxed manner, and in many ways that was liberating. The university is increasingly operating as a project organization with deadlines and deliverables – often at the behest of industrial partners – and as a result, we sometimes risk losing sight of our task to educate scientists.”

Then, with shining eyes, Lizan reaches for her dissertation. The bright colors on the front cover – symmetrical yellow and green, her favorite colors – were carefully considered. “Every time I sat at the table with Paul, all the information from that bookcase would hit me. That was until I knew exactly what the bookcase looked like. And I knew: after that long row of dark blues and blacks, the final dissertation on his shelf should have a color that really pops out.”

But now that Paul is slowly tidying up his room – he will give his valedictory lecture in April and will be sharing his room with colleagues – the bookcase is no longer what it used to be. Fortunately, he still has the drawing Lizan gave him when handing over her thesis. It will serve as a long-lasting reminder of this adventure and all the other stories behind all those covers. 

Source: Cursor