What were you researching?
“I studied psychosexuality among young people with autism. That means sexuality in the broadest sense of the word: behaviour, all the personal elements, what’s happening within a person, and the social facets like education and interaction with peers, parents and media.”
What led you to undertake this research?
“A large Dutch mental health institution treating autistic youths, Yulius, realised that these young people were faced with sexual problems. My supervisor worked at the Sophia Children’s Hospital and was brainstorming with Yulius colleagues on how to tackle the problem. What’s tricky is that many parents and practitioners had long thought that people with autism wouldn’t be interested in sex, because they have more social and emotional difficulties. And while no parent finds it easy to talk about sex, it’s even more complicated when children also have social and emotional problems. So there were concerns, but no-one took up the issue. Only relatively little research had been done in any case. Where there was scientific literature, it was about problematic behaviour such as stalking or masturbating in public, and the questions had only been answered by parents and practitioners.”
What’s the most important conclusion from your research?
“Autism plays a unique role in psychosexual functioning. Although it doesn’t necessarily entail problems, autism does increase the risk of there being difficulty in functioning. I have also shown that it’s important to question young people themselves, not just practitioners or parents, because there’s a clear difference between these groups’ answers.
“Earlier research showed that those with autism learn differently. For example, they have more difficulty with learning implicitly, they don’t ‘just pick things up’ like people without autism. But in fact, sexuality involves a great deal of nuance, and there’s little strict, fixed knowledge. A great deal of sexual knowledge is also transferred in a vague way: ‘The birds and the bees, making love’. Parents and social workers often find it difficult to explain what really happens in specific terms.
“One example of the consequences of a lack of knowledge: one of the young people I treated told me he had a girlfriend. In fact, the relationship actually turned out to be that he was at her door every day. Something like that can escalate badly.
“That’s why we developed a training course that’s extremely specific, with a manual, drawings and pictures. As part of my dissertation I tested these with thirty young people, which revealed an increase in psychosexual knowledge. Since then the course has also been tested in a larger group, with the same positive outcome.”
You’ve been working on it for a while.
“I began in 2010. The project was actually underfunded; we only had two years of funding from the Sophia Foundation. So it didn’t start out as a graduation project. In the course of those two years it then turned out that Yulius would also pay for a year of research. We felt that three years would be tight, but perhaps we would manage. Now I know this was extremely unrealistic. I began working at the ESSB as a teacher after three years, and completed the dissertation in my spare time. That’s the way it goes: life happened, and suddenly I was nine years further on.”
Was there ever a moment when you thought: I’m throwing in the towel?
“Of course it’s tough, especially when you’re doing it in your spare time. I had made quite a bit of progress after three years, and then for six years I just kept thinking: I’m almost there. Certainly there were times when I wondered why I was doing it. I would have loved to go to the movies on a Friday, but there I was again, working my Fridays and Saturdays on this. I never seriously considered giving up, but I did let myself think about it now and then, just to be kind to myself.”
What’s on the cover?
“A creative friend and I brainstormed. How do you capture autism and sexuality in a picture? Love is really complicated. For many people a heart represents relationships, love or sex, but we don’t have much insight into what’s going on inside. These three coloured radars symbolise the three elements of psychosexuality. The funny thing is that everyone sees something different in it, like a robot heart because it’s white. But that’s not what I wanted to reflect. Above all, I didn’t want a cliché with a red heart – and I just liked white.”
