The Dutch Autism Registry was founded in 2013. The history overview shows the developments that the NAR has undergone in recent years using the highlights.
2013
Beginnings of the NAR
The Dutch Autism Association (NVA) and the Free University jointly established the Dutch Autism Register (NAR). Previous surveys from the NVA provided a lot of useful information (see below) but until then there was no research institute that collected information about people with autism on a similar scale. Therefore, the NAR was established. People could register as participants for our annual questionnaires from this point on.
First project survey
In 2013, the NAR published the first project survey based on data from the 2008 NVA survey. Project surveys focus on a specific topic around autism. This first project resulted in one of the first papers worldwide describing late diagnosis and showing that on average, women receive an autism diagnosis later than men. To this day, this paper is widely cited by other scientists.
First NAR report
This year also saw the release of the first report in which we gave an overview of the state of the art on a wide range of topics. For example, gender distribution among participants, ages and demographics. Since 2013, a report has been produced every year using the most recent data from our participants. Here the focus is on the differences between individuals with autism.
2015
The first annual questionnaire
In 2015, the first annual questionnaire was sent to NAR participants. The conclusions and findings based on this survey can be found in this NAR report.
2016
First NAR panel
One of the ways we collaborate is by submitting our research and projects to our NAR panel. This was set up in 2016 and consists of a diverse team of autistic people who provide us with feedback and tips. What could be improved, what is going well and what are we overlooking? With the help of the panel, we are sure that our research contributes to important issues.
The first personal survey
In this year, the first personal overview was also fed back to the participants. In it, each participant gets an overview of their own scores and can compare them with the average of the NAR participants.
2018
Start of studies:
2020
Research start:
First NAR congress
In 2020, our very first, grand congress was planned, with lots of inspiring speakers and music. Unfortunately, the corona crisis threw a spanner in the works. Therefore, we organised an online symposium in 2021. This laid the foundation for our future congresses that we organise together with the NVA. The most recent congress took place on 11 November 2023.
2021
Start of studies:
Driving licence advocacy
Every year, thousands of people with a diagnosis within the autistic spectrum have to undergo a driving fitness test at the Central Bureau for Driving Licences (CBR). In 2021, Reporter Radio showed that there is no scientific evidence showing that people with autism are a danger on the road. The NAR made our data available for this study.
So we use our figures not only for science and our participants, but also for advocacy in which we stand up for our target group. We do this not only in the field of obtaining and renewing a driving licence, but also, for example, in the field of appropriate education and alternative treatment methods.
2022
Launch of studies:
Oration Sander Begeer
On May 20, 2022, Sander Begeer was appointed professor of Diversity and Autism at the Vrije Universiteit. Here, as part of his appointment, Sander gave a lecture. This is also called an oration. Together with the NVA, Sander is the initiator of the NAR. He has been doing research on autism for more than 20 years. Sander says, "We used to talk mainly about people with autism, now we talk more about people with autism. That is much more inspiring and relevant!'
Prior to Sanders' oration, a symposium, a scientific congress entitled: 'Diversity in autism' was held at the VU. NAR ambassador Vincent van Loenen presented this symposium, and speakers Jasper Wagteveld, Birsen Basar, Elijah Delsink and Annemiek Koster each told a personal story about their autism.
2023
Start of studies:
CBS figures
On the NAR in figures page, you can compare figures from the NAR surveys with figures on a similar group from the general population since 2023. We do this in a collaboration with Statistics Netherlands (CBS). In doing so, we show figures on work, education, welfare and social contacts. By comparing outcomes of the NAR with those of the general population, we know whether people with and without autism differ in their living situation.
New website
In 2023, we completely revamped our website to make it more accessible and clearer for visitors. This way, we can better present our research results, publications and other news.
Jubilee!
Ten years after its inception, the NAR organised another congress on 11 November 2023 with the theme: 'All autism, all different!'. The congress addressed diversity in culture, age and gender. The day showed the different colours of autism and plenty of attention was paid to the 10th anniversary of the NAR and the 45th anniversary of the NVA.
Presentation of first Municipal Award
In our annual questionnaires, NAR participants can rate their municipality on various aspects. These include autism-friendliness and knowledge, but also the availability of autism-specific facilities in their municipality. Based on these ratings, the most autism-friendly municipality is awarded the Municipal Award , which was first presented to the municipality of Veldhoven in 2023. In 2024, it was Apeldoorn's turn!
The results of the assessment by the NAR participants map which municipalities are already well on their way in terms of autism-friendly policies and which municipalities still have steps to take to offer more support to their residents with autism. The Municipal Award thus helps to make the whole of the Netherlands more autism-friendly!
2024
Start of research:
Autism Works
In mid-2024, the NAR, together with a large number of public and private partners, started the research project Autism Works. The project is carried out by a (neuro-)diverse research team consisting of people with autism themselves, scientists, employees, employers and (occupational health and safety) professionals. The goal of this project, which will last approximately 6 years, is to create a breakthrough in the labour market and to support employers and employees in promoting sustainable labour participation of people with autism.
On Friday, November 22, 2024, the first network meeting was organized at the Vrije Universiteit Amsterdam: AutismeNetWerkt. This involves searching for people, organizations and perspectives to include in the project.