It was immediately clear to Vincent van Loenen: his share of his and his wife's estate will go to the Nederlands Autisme Register (NAR), the VU's research institute, which aims to better understand autism, and to better support people with autism.'My wife and I have no children, and then you reach an age when you start thinking about what should happen to your money and possessions when the surviving spouse dies,' saysVincent. 'We then decided by mutual agreement that we could each donate half of that inheritance to a charity of our own choosing.Well, for me that wasn't difficult: I support the NAR very much. I myself am a 'certified autistic' and gifted, and I am an ambassador with the NAR.'
That immediately brings up a special aspect of the Autism Register, says Sander Begeer, professor of clinical developmental psychology at VU University Amsterdam and co-founder of the NAR: 'In our research institute, people with autism work. We speak with them, rather than about them: nothing about us without us. And that is quite unique in this research world.'
Sander and I often give presentations together at companies, governments and educational institutions, and at conferences,' Vincent adds. 'Then I open with practical examples of what you encounter as an employee, patient, or citizen with an autism diagnosis. Often there is still stubborn prejudice and misunderstanding - the movie 'Rainman' still resonates.And conversely, I make people think: what is actually 'normal', what is autism and what is the boundary between the two? It is not so black and white and that is often an eye-opener for people. I therefore prefer to speak of the humanspectrum rather than the autism spectrum.'
'And from our research I can then explain that,' Sander continues. 'After all, we as the NAR have unique research data in the field of autism. The NAR originated in 2013 when the Dutch Autism Association (NVA) asked if the VU could include its members' data in a follow-up study.Those questionnaires were further developed and now form the basis for our longitudinal study, where we administer questionnaires annually to map how people with autism experience their lives and their environment and how that changes. This gives us incredibly valuable data with which we can identify patterns, not only in individual lives of people with autism, but also, for example, in social stigmas and barriers.'
Because there is still a lot of ignorance about autism - from family to education to employment - Sander says: 'And that's not surprising, because the research field is changing at breakneck speed. Some twenty years ago autism was still approached from the point of view of the clinical picture, the medical model of autism. Nowadays we look much more at the social model: how do people with autism interact with their environment, what's wrong with that and what is needed to make a better connection? Thinking about autism is also changing. Nowadays we speak of 'neurodivergent', and the characteristics of autism and ADHD, for example, often appear together. There are even voices saying: perhaps these are two manifestations of a similar underlying mechanism. In short, a great deal is happening, and that makes research so extremely interesting and necessary!'
But the NAR also emphatically looks beyond the research field. 'We distinguish ourselves because we also look at practical applications,' Sander explains. 'We want to share the insights, create social awareness and offer tools for both people with autism themselves and for society. For example, as a participant in our research, you receive information about your personal situation: what does my autism look like compared to the average people with autism? Those individual, personal reports are very much appreciated.'
Vincent adds, 'We also test psychological interventions for, for example, depression, insomnia, anxiety - common issues that people with autism encounter in their interaction with the outside world. And we talk to companies and other sectors about how to facilitate employees with autism and make better use of their competencies. We have also set up an award for autism-friendly municipalities. Because we would like to give the positive examples a stage.'
It is precisely this mix of research and application that makes the NAR so valuable, argue Sander and Vincent. 'In the Netherlands there are probably between 200,000 and 300,000 people with autism. Many of them have additional psychological problems due to their autism, which causes a lot of suffering. And vice versa, society misses out on a lot of talent due to the prejudices and misunderstandings surrounding autism,' Sander explains. 'Our work is therefore badly needed. And precisely that valuable longitudinal research requires a lot of long-term funding, which we can't get around with short-term project funding. That is why we are happy that the VU Fund wants to help with a fundraising campaign. This also fits very well with the social responsibility that VU sees for itself as a research and educational institution.'
For Vincent, it confirms that his choice to make a bequest to the NAR, via the VU Fund, is the right one. He does have one more tip for people considering a bequest: 'Make sure to record exactly what you are donating to. Because it could just happen that the club you give to disappears or is taken over. Then you don't want your legacy to end up in a big pile. That's why we have established that our bequest will go through the VU Fund to the NAR, or its legal successor. That way I'm sure this fine organization can continue its good work for an autism-friendly world.'
Thinking about bequeathing to science?
We would be happy to help you explore the possibilities and steps to include VU in your will. Feel free to contact Kaat Burbidge-van Velde, Senior Relationship Manager, at vufonds@vu.nl.