Stifling Feelings: Autism and Loneliness in Schools

'Drop-out from school is high among pupils with autism,' says Carolien Rieffe, development psychologist and lead researcher at the Focus on Emotions Lab. 'But what causes so many of these pupils to drop out and stay at home?' This question led to the Building 4 Belonging research project, for which the Lab was recently awarded an NWO subsidy. 'In this project we look at what schools can do to keep pupils with autism attending classes. We had already distributed questionnaires among pupils, in which we asked them: to what extent do you feel comfortable at school? To feel comfortable, you need to have the feeling that you're being listened to, that what you feel matters. If you don't have that feeling, school can be a desperately lonely place.'

'Anyone who doesn't feel they are listened to at school can feel desperately lonely there' - Carolien Rieffe

Rieffe and colleagues Yung-Ting Tsou, Desiree Hooi and Elijah Delsink recently published the article Loneliness and Autism in scientific journal Autism on this very subject. Elijah Delsink and Desiree Hooi as co-authors of the article and experiential experts share what this loneliness meant for them.

How do you experience that loneliness?

Elijah: 'It started when I got my HAVO certificate and went on to VWO. Many of my friends left school at that point and I found myself in a class with new people. I find it hard to make new friends; there has to be some shared interest that brings us together. I have hyperfixations and compulsive interests, for example with gaming; if I can't talk about gaming for hours on end, there won't be a click between me and other people. And that click wasn't there. At break time, I sat on my own in a room a lot of the time. I felt really alone.'

'I'd stand in the middle of the school yard performing' - Desiree Hooi

Desiree: 'I recognise that. Earlier on, I got on well with other pupils in my class, but I wasn't part of any close group of friends. What Elijah has with gaming I have with theatre and music. I'd stand in the middle of the school yard, performing or making music. A lot of the time I was in my own world. I was very close to my family. My uncle and I are both on the spectrum, and we have the same interests. When I told him I was excluded at school, he said: 'Don't ever let yourself be influenced by other people. Believe in yourself because you're special. You've got your parents and me; I'll always be there for you.' On Curaçao, where I was brought up, life's much more close-knit than here so I had a lot of contact with my family. When I came to live in the Netherlands, both my grandmothers died, my uncle started to suffer from dementia and my parents were a long way away. I really felt very lonely.'

'A lot of young people with autism feel they have to fit in as much as possible, and hide any differences,' it says in the article. Can you explain that?

Elijah: 'Just about everyone with autism tries to hide it; that's unavoidable. Even if your mother comes into your room and says: "Your aunt and uncle are here. Are you coming to say hello?" . Our true autistic self is often not appropriate in social situations so we camouflage how we really are. Even now in this interview I'm putting on a mask. I'm very introverted and quiet, but I see how other people behave, how characters in films act who are charismatic and can talk easily, so I behave the same way.'

'I often come home from school exhausted' - Elijah Delsink

Desiree: 'I'm better at joining in conversations about the latest trends, but some subjects just don't interest me at all. People used to be much less aware of autism. I was always masking how I was feeling, trying to fit in and compensating, so it became automatic. On Curaçao at a certain point in time it got easier. People knew me through music, theatre and work, which made a big difference. Now I'm working in the Netherlands, I'm experiencing the same thing again. If you don't join in, you can become excluded or miss important opportunities. It's distressing and exhausting.'

Elijah: 'Yes, it's totally exhausting. I'm constantly having to stifle my real self, and I'm exhausted when I get home from school.'

Carolien: 'How do you get on with your fellow pupils?'

Elijah: 'With other autistic people I can be more myself, so there's not that pressure to mask the way I am. Special schools are definitely better than regular schools, which makes things easier. But it's still a difficult process.'

In your article you see architecture as an important first step towards a more inclusive school environment and reducing loneliness. Why is that?

Elijah: 'A lot of schools are not built with us in mind. Even at special schools you can tell they weren't originally built for that purpose. Corridors and classrooms are much too narrow and small, there's no calm canteen, no good library where you can go and sit in peace for a while, no space to just be quiet. And if there is a quiet space, there's no proper supervision and it becomes an area where people just hang out and talk. There's no room for the peace and calm that we need.'

'Autism-friendly architecture gives all pupils the chance to recharge their social battery' - Carolien Rieffe

Carolien: 'In December, I wrote about autism-friendly architecture together with Alexander Koutamanis, an architect at TU Delft. From interviews with pupils with autism, we already knew how restrictive the physical school environment often is. Of those pupils, none had a friend at school, and some already had stomach ache by Sunday evening. The physical space plays a big role here. Pupils couldn't get to their lockers, jostled one another when moving from one class to another, and they couldn't cross the school yard without having a ball thrown at them. The over-stimulation that pupils with autism experience as a result of these factors is something you don't actually see. But they do feel it! A school building that isn't adapted is like asking someone in a wheelchair to climb the stairs in a building and find their own way. Autism-friendly architecture, such as seating in the corridors and enough quiet spaces give all pupils the chance to recharge their social battery, not only pupils with autism.'