For Vincent van Loenen, the decision was immediate: his share of the inheritance from him and his wife would go to the Netherlands Autism Register (NAR), the VU research institute dedicated to improving understanding of autism and strengthening support for people with autism. ‘My wife and I do not have children, and at a certain point in life you begin to think about what should happen to your money and possessions when the surviving partner passes away,’ Vincent explains. ‘After careful discussion, we decided that each of us could donate half of our estate to a charitable cause of our own choosing. For me, the choice was easy: I care deeply about the NAR. I am a “certified autistic person” myself, I am highly gifted, and I am also an ambassador for the NAR.’
That immediately highlights one of the distinctive aspects of the Autism Register, says Sander Begeer, Professor of Clinical Developmental Psychology at Vrije Universiteit Amsterdam and co-founder of the NAR. ‘People with autism work within our research institute. We speak with them rather than about them: nothing about us without us. And that is still fairly unique in this research field.’
'What is actually “normal”, what is autism, and where is the boundary between the two?'
‘Sander and I often give presentations together at companies, government organisations, educational institutions and conferences,’ Vincent adds. ‘I usually begin with practical examples of the challenges people may face as employees, patients or citizens with an autism diagnosis. There are still persistent misconceptions and a lack of understanding – Rain Man continues to shape how many people think about autism. And I also encourage people to reflect: what is actually “normal”, what is autism, and where is the boundary between the two? In reality, it is not nearly as black and white as people often assume, and that can be a real eye-opener. That is why I prefer to speak of the “human spectrum” rather than the “autism spectrum”.’
‘And our research helps explain exactly that,’ Sander continues. ‘At the NAR, we have unique research data on autism. The NAR was founded in 2013 following a request from the Dutch Association for Autism (NVA), asking whether VU could incorporate member data into a follow-up study. Those questionnaires were further developed and now form the basis of our longitudinal research. Each year, we collect data to understand how people with autism experience their lives and their surroundings, and how this changes over time. This has given us incredibly valuable data that allows us to identify patterns – not only in the lives of individuals with autism, but also in wider societal stigma and barriers.’
'So much is happening – and that makes research both incredibly fascinating and absolutely necessary.’
There is still a great deal of misunderstanding about autism – from family life to education and employment, Sander explains. ‘And that is understandable, because this research field is evolving rapidly. Around twenty years ago, autism was primarily approached from a medical perspective, as a disorder or condition. Today, we focus much more on the social model: how do people with autism interact with their environment, where do difficulties arise, and what is needed to create a better fit between individuals and society? Our thinking around autism is also changing. Terms such as neurodivergent are now widely used, and we increasingly see that characteristics of autism and ADHD frequently occur together. Some researchers even suggest that they may be different expressions of a comparable underlying mechanism. In short, so much is happening – and that makes research both incredibly fascinating and absolutely necessary.’
But the NAR also looks well beyond research itself. ‘What sets us apart is that we also focus strongly on practical applications,’ Sander explains. ‘We want to share insights, raise societal awareness, and provide useful tools for both people with autism and society as a whole. For example, participants in our research receive information about their own personal profile: what does my autism look like in comparison with the average person with autism? These individual, personalised reports are highly valued.’
It is precisely this combination of research and practical application that makes the NAR so valuable
Vincent adds: ‘We also evaluate psychological interventions for issues such as depression, insomnia and anxiety – common challenges people with autism often encounter in their interaction with the outside world. We work with companies and other sectors to explore how they can better support employees with autism and make better use of their strengths and talents. We have also introduced an award for autism-friendly municipalities, because we want to highlight and celebrate positive examples.’
It is precisely this combination of research and practical application that makes the NAR so valuable, Sander and Vincent explain. ‘In the Netherlands, there are estimated to be between 200,000 and 300,000 people with autism. Many of them experience additional mental health challenges alongside autism, and that represents a great deal of suffering. At the same time, society misses out on a huge amount of talent because of prejudice and misunderstanding surrounding autism,’ Sander says. ‘That is why our work is genuinely needed. And this valuable longitudinal research requires long-term funding, which cannot be sustained through short-term project grants alone. That is why we are grateful that the VU Foundation is helping to support this through a fundraising campaign. It also fits closely with the social responsibility that VU sees for itself as a research and educational institution.’
For Vincent, this confirms that his decision to leave a legacy gift to the NAR through the VU Foundation was the right one. He also has a tip for people considering leaving a legacy: ‘Make sure it is clearly documented exactly what you are supporting. Organisations can disappear, merge or be taken over. You do not want your legacy simply to disappear into a general fund. That is why we arranged for our legacy gift to go through the VU Foundation specifically to the NAR, or to its legal successor. That way, I know this wonderful organisation can continue its important work towards a more autism-friendly world.’
