Do you have questions about the NAR or our scientific research? On this page you will find answers to the questions most frequently asked.
If you cannot find an answer to your question here, you can always email info@nederlandsautismeregister.nl. Questions related to individual assessment and treatment we unfortunately cannot answer.
The NAR is an initiative that conducts research on and with people with autism. We do this by means of an annual questionnaire and separate projects. With our facts and figures, we play a major role in advocacy for our target group. We also collaborate with various organisations to learn more about autism.
The NAR identifies differences and similarities among autistic people through personal and family characteristics collection, diagnostics, counseling, and education, among other activities. Be sure to check out the pages under "Current Research" for our current projects.
Read more information for participants and register with the NAR.
Yes. You can also participate if you have a child with autism or if a representative for an adult with autism cannot complete the questionnaire yourself. Are both not applicable? Then you can sign up for our control group. By doing so, you help us discover any differences or similarities between people with and without autism. You can find all application forms here.
The NAR recognises and respects the diversity of gender identities. We strive to create an inclusive environment where everyone's identity is respected and valued. Depending on the survey, we will ask about birth sex and/or gender identity.
After completing an application form, you will receive your first questionnaire. After that, you will receive an invitation for a new questionnaire every year in spring. You can also choose to take part in additional surveys. These take place several times a couple of years.
We at the NAR are still growing every year and would like to continue to do so. After all, a high number of participants is very valuable for our research. This way we can make more precise statements about the entire target group. In January 2024, the NAR had 4,846 participants. This includes people with autism, parents of children with autism, legal representatives of people with autism as well as control participants. Of these people, about 40% complete the annual questionnaires.
You can apply through our application page by clicking on the appropriate form there. After this, you will immediately receive a questionnaire that you need to fill in to complete your application.
The moment you are a participant in the NAR, you will automatically receive an e-mail when you are eligible to participate in research. You do not have to do anything for this yourself.
The data are used in our surveys. The Dutch Autism Association (NVA) uses the results of these surveys for advocacy for people with autism.
You can see the results of the annual questionnaires in the reports. Every year, each participant receives a personal summary. In it, participants can compare their personal results with the averages of other participants.
Research results will also be reflected in scientific publications written by our researchers.
To safely handle personal data collected during our research, we at the NAR work with two databases (computer systems in which information is stored) that are separate from each other. This allows us to process personal data and data separately.
After each annual questionnaire, you, the participant, will receive personal feedback on your results. This is therefore your unique overview. This will also give you the NAR averages per subject, so that you can compare your scores with all other NAR participants. See here for an example.
At the NAR, we believe that research on autism is best conducted in collaboration with people with autism. So we work closely with our target group; we call this co-creation. For instance, our NAR team is largely made up of employees with an autism diagnosis. We also have a NAR panel consisting of a diverse group of participants, which provides us with valuable feedback. The panel members give their opinions on our surveys, communication and general line. In this way, we ensure that our research is as in tune with our target audience as possible.
This has to do with how we handle data privacy and how useful the data is for our research. Last year, nearly 2,000 people completed our annual survey. An open-ended question is then quickly answered by more than 500 people. Processing open-ended questions takes a lot of time and effort. Also, the way people interpret the answers can differ, making it difficult to compare the results with previous years. In addition, participants may sometimes share privacy-sensitive information in their answers, which poses a risk. Where appropriate, we provide space for people to formulate their own answers, but we try to limit the number of open-ended questions. However, this does not mean that we do not take into account the diversity of our group: we try to pay as much attention to this as possible when selecting the closed questions.
We understand that words like often, sometimes or never can mean something different to everyone. It is sometimes difficult to know what to choose then. Nevertheless, we use these words in many of our questions because they come from existing questionnaires. Those questionnaires were created by researchers and are also used in other countries.
We are not allowed to change the questions and answer options. Only then can we properly compare the results of our survey with other surveys.
Are you unsure about an answer? Then choose the answer that best fits how you usually feel or behave. There is no right or wrong answer, it's all about your own experience.
Should you, as a researcher, wish to make use of NAR data, that is certainly possible. We are happy to share our knowledge with others. Take a look at our available data and the form you can fill in to request data.
To change personal data such as your name and e-mail address, we have change forms. If any other data is involved, you can always email info@nederlandsautismeregister.nl.
For the quality of our research, it is important that as many people as possible participate. Should you decide you no longer want to participate, you can let us know by filling out the unsubscribe form or by sending an e-mail to info@nederlandsautismeregister.nl.
For other questions, please feel free to email info@nederlandsautismeregister.nl.