Discussion with James, PhD Student

Tell us about your story…

I was a late bloomer at university.

I first went to Brighton. At this stage, I didn’t know my diagnosis. I was struggling with many of the things that autistic people often deal with, without knowing how to manage anxiety and depression and so on.

I found it really hard – it was not something I could get my head around. I seemed then, and I still do now, to be doing so well in some areas and face some difficulties on some other very basic areas.

I eventually left university and was self-employed for a while, and then I was hired in many jobs as a photography specialist.

I moved to London and was still kind of struggling with different things. And there, they gave me my diagnosis. This gave me a whole different lense on my story. Also, the psychologist therapy is not the same as you know, if you talk to an autistic person or a neurotypical person.

With my diagnosis, I was able to re-enter university and get some support, and from then on, I could get my bachelor and all the rest of it, did a computer-science bachelors, then a masters in artificial intelligence and robotics. I got top marks in these fields.

If I hadn’t had the support, I would have just thought I wasn’t made for it!

I met someone from Switzerland and decided to do my PhD in Switzerland.

What is it like for an autistic person to live in a neurotypical world?

As a kid, I think I must have been very autistic already. My dad once gave me a book on body language, he said it would maybe help me. I think it was a blessing and a curd, because it allowed me to blend in some way, but then, I have learned to hide. My body language reading is quite efficient but it is an academic learning.

I learned about conversations: so when they show some kind of behaviours, that means that I should stop talking. I am still not perfect but I am certainly better than I was.

I can get a sense of what people think. Before that, I was just talking to people without interruption, without wondering if they wanted to talk to me.

Romantic meetings, that was a big thing as well. It can be a massive source of stress.

What is helping you on a daily basis?

For me, some routines are helpful. So, my research is into looking how technology can help people understand what would help them and function with their unique way. The area I am working in is to help people flourish. In a way this is very related to my own story.

I have the ability to comprehend and use the tools, but a lot of people don’t, and don’t have the best kind of support around them, so I see it as an obligation on my part that people can have the same support as I have developed for myself.

What kind of tools are you using on a daily basis?

I use a task manager tool. For example – Things or Omnifocus, and sometimes reminders. I keep a paper journal as well, so I can reflect on what is happening in my life. I try to capture things that happen to my life as quick as possible in my journal in order to stop myself from overthinking. Knowing that it is there and that it is external helps a lot.

The support that I had in UK was tools and people: tools to stays organised, and a key worker that I would talk to every few weeks.

I still have a weighted blanket in my office and at home, so if I need something to be more grounded, this blanket helps me.

I also have a lot of checklists, so when I struggle in getting organised, I do some lists and that helps me.

Online, I find a lot of things. Some communities are friendly, like for example reddit- where there is a great community that I can relate to.

What is your life now as a swiss student?

I looked for some support when I arrived in Switzerland, but as you know, that doesn’t really exist. I am very honest. So, when I applied for my PhD, I told about my autism so that my professor would be aware of the whole “package” I was coming with.

Another thing I need to deal with is my own expectations about myself. For example, I had to teach and the first time I was super anxious, but I eventually learned to accept myself as I was.

When I had to present my thesis, I was super stressed, and thankfully my professors where aware of that “don’t judge me for who I am in a moment but take the whole considerations on my strengths and weaknesses as a whole”.

Having other people like me around me also helps.

What is university for you?

University allows me to get closer and closer to something I was passionate about. I came the closest I had ever gotten to my interest

But at university, you have this tremendous amount of freedom – you leave home – you spend the first years living away from your parents and all. So I had so much to manage at the same time. From study, where I was totally focused and passionate about, to doing housework, and take care of myself, and recognising when I needed to slow down and regulate. So nobody teaches you to regulate your intensity. So if you don’t know how to do that, you get into a burnout.

Now I use an application called time out, so it tells me to step away from the screen on a regular basis. So – if neurotypical people don’t regulate as seriously, they will be okay, but if I am not serious about it, I use all my energy all at once.

Protecting time is my priority. Setting time to have time, kind of …

(…)

If I talk to people, that is particularly exhausting. So for example I try to limit the numbers of meetings per day. And I leave the rest of the day meeting free.

When I was a student, I used to focus on getting everything possible from the lectures. The second time around, I learned to take the most important. So I learned to focus on the main information.

I used different strategy of note taking. For example the Cornel note taking. How to take smart notes is a book that also helped me.

What are your last advices for autistic students?

Perfection is a very common problem with ASD. As soon as you learn that this is not the way, it is a great benefit. With my paper journal, I tend to write the first page on something really profound and choose a way to kind of destructure this first step of perfection by for example ripping it.

All these systems are kind of like riding a bike. It seems all weird the first time. But if you repeat, it becomes easier and easier. So I have to think less about how I do things but just do them. For example I have a list for things to do If I have a bad day. Or a list of what to do if I need an ice breaker, or… they are all first day books, kind of …

Also, on Mendeley, I have a folder to put the weird papers I like and that make me laugh, but that are off focus for my thesis, so I can read a bit of this if I need a break. The same for films and books.

An idea would be to meet with a group of ASD students, and every one can put their questions in the box and randomly we take a note out and discuss it, which helps the ones who don’t necessarily want to be on the spotlight to have their answers any way. This would help students to help see the world more nuanced than just the black and white extreme usually seen by the ASD.

Someone who needs help will logically have trouble to ask for it. Some teachers sometimes need to make the first move. There are different ways to offering you help. Just start a conversation.