Note: Unfortunately, the Netherlands Autism Register is a research organisation and therefore cannot answer questions regarding individual diagnostics and treatment. You can contact your general practitioner (GP), in Dutch 'huisarts', for questions about (referrals for) diagnoses, treatment or medication. Don't have a GP yet? Check for tips on how to find one. If you are a refugee or asylum seeker, please contact the GZA: If you are a refugee from Ukraine and not requesting asylum, please check

For general questions about autism, support groups or advice you can contact the Dutch Autism Association (NVA): For more information in English about autism related organisations in the Netherlands, check:


Netherlands Autism Register

The Netherlands Autism Register (NAR) is a longitudinal register, including approximately 3500 individuals with autism. The NAR was established by the Dutch Association for Autism (Nederlandse Vereniging voor Autisme; NVA) in collaboration with the Vrije Universiteit Amsterdam (VU) .

In this presentation you will find a brief explanation of the Netherlands Autism Register. If you need more information, feel free to contact us. 

Researchers who want to collaborate with the Netherlands Autism Register can go to the page 'for researchers' for more information.

The Dutch Autism Register has been approved by the Permanent Committee on Science and Ethics (VCWE) of the VU University Amsterdam.

Number: VCWE-2020-041R1
Letter of Approval: VCWE Decision on VCWE-2020-041R1


The aim of the NAR is to follow the course of development of individuals with autism over time, primarily through online questionnaires. We collect information on a wide range of topics related to the living situation of people with autism in the Netherlands. This way we can identify the differences and similarities between people with autism. The data from the NAR are valuable for scientific research. The NAR also helps people with autism to protect their interests and improve their quality of life.

Parents of children with autism, people with autism, but also health care professionals and scientists all have questions about autism. Together, we can find answers to these questions. For instance, one person with autism may be able to hold a job, and have a satisfying social life, while the other one, despite similar cognitive skills, fails to do so. What causes such individual differences? What additional problems do individuals with autism develop? What are the benefits of having autism? What are success factors? By following a large group of people we can explore what factors have an impact on their quality of life. 

The NAR collaborates with national and international researchers, and aims to share information to improve knowledge and care for autism around the world.

For whom?

Dutch-speaking parents of children with autism, legal guardians of people with autism, adults with autism (>16 year) and adults without autism can participate in the NAR. The participants are followed over time, which means that they receive one questionnaire per year. For each questionnaire, the participant can decide whether they want to participate. Participation in the registry is voluntary and free. All data will be processed confidentially and is encrypted and stored in a secure system. 

Domains of research

We know more and more about autism. For example, autism is highly hereditary. Furthermore, we know about the brain functioning of a person with autism. We also know that there are large individual differences in the extent to which people with autism are capable of independent, meaningful and happy life. But what factors determine successful outcomes?

The Netherlands Autism Register identifies differences and similarities between people with autism. We collect information on, amongst others, the following domains:

Recent publications NAR

See 'Publicaties NAR' for all publications from NAR-members


1 Hoekstra, R. A., Vinkhuyzen, A. A. E., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen, S., Posthuma, D., & Van Der Sluis, S. (2011). The construction and validation of an abridged version of the autism-spectrum quotient (AQ-short). Journal of Autism and Developmental Disorders, 41(5), 589–596.

Ross, E., & Oliver, C. (2003). Preliminary analysis of the psychometric properties of the Mood, Interest & Pleasure Questionnaire (MIPQ) for adults with severe and profound learning disabilities. British Journal of Clinical Psychology, 42(1), 81–93.

3 Moss, J., Oliver, C., Arron, K., Burbidge, C., & Berg, K. (2009). The prevalence and phenomenology of repetitive behavior in genetic syndromes. Journal of Autism and Developmental Disorders, 39(4), 572–588. 

4 Tavassoli, T., Hoekstra, R. A., & Baron-Cohen, S. (2014). The Sensory Perception Quotient (SPQ): development and validation of a new sensory questionnaire for adults with and without autismMolecular autism5(1), 1.

5 Bastien, C. H., Vallieres, A., & Morin, C. M. (2001). Validation of the Insomnia Severity Index as an outcome measure for insomnia research. Sleep medicine,2(4), 297-307.

6 Chung, K. F., Kan, K. K. K., & Yeung, W. F. (2011). Assessing insomnia in adolescents: Comparison of insomnia severity index, athens insomnia scale and sleep quality index. Sleep Medicine12(5), 463-470.

7 Morin, C. M., Belleville, G., Bélanger, L., & Ivers, H. (2011). The Insomnia Severity Index: psychometric indicators to detect insomnia cases and evaluate treatment responseSleep34(5), 601-608.

8 Bedell, G. M. (2004). Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation. NeuroRehabilitation, 19(3), 191–205.
9 Trottier, A. N., Brown, G. T., Hobson, S. J. G., & Miller, W. (2002). Reliability and validity of the Leisure Satisfaction Scale (LSS - Short form) and the Adolescent Leisure Interest Profile (ALIP). Occupational Therapy International, 9(2), 131–144.

10 Grove, R., Roth, I., & Hoekstra, R. A. (2016). The motivation for special interests in individuals with autism and controls: Development and validation of the special interest motivation scale. Autism Research, 9(6), 677–688.

11 van Beuningen, J., Coumans, M., & Moonen, L. (2018). Het meten van eenzaamheid.

12 Bartels, M., & Boomsma, D. I. (2009). Born to be happy? the etiology of Subjective well-being. Behavior Genetics, 39(6), 605–615.

13 Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24(4), 385–396.

14 Maenner, M., Smith, L.E., Hong, J., Makuch, R., Greenberg, J.S., & Mailick, M.R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8-17.

15 Pearlin, L.I. & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19(1), 2-21.