1. What do we mean by autism?
‘Autism is an umbrella term for behavioural characteristics that indicate differences in information processing in the following areas: social interaction, communication, flexibility in thinking, movement and behaviour, sensory processing, and filtering and integrating information’ (Autism Care Standard). The ‘social intuition’ and the way people with autism process information and sensory input appear to develop differently. How this presents itself varies greatly from person to person. That is why autism is now often referred to as a spectrum. There is no ‘biomarker’, such as a blood or DNA test, that can objectively identify autism. As a result, diagnosis is still based on behavioural characteristics.
(source: Nederlandse Vereniging voor autisme [https://www.autisme.nl/over-autisme/wat-is-autisme])
2. What challenges do people with autism face in society?
People with autism regularly encounter misunderstanding, stigma and practical barriers in society. Some may struggle with social interaction, experience bullying, find it difficult to make friends or form relationships, and feel disconnected from the world around them. These difficulties often arise primarily because of a lack of understanding from others, rather than autism itself. In the workplace, people with autism may face sensory overload, a lack of structure and clarity, and misunderstanding from colleagues and managers. This can lead to uncertainty, fear of failure and depression. Long waiting lists for diagnosis and treatment, combined with the fact that autism is often only recognised later in life according to NAR data, can also cause stress and uncertainty. As many as 80% of people with autism have experienced suicidal thoughts – ten times higher than the average Dutch population.
3. What helps people with autism at work and in society?
Autism presents differently in every person. This means that no single support tool or approach works equally well for everyone. However, there are several general factors that can help.
People with autism may benefit from structure, understanding and small adjustments. In the workplace, clear agreements and well-structured meetings can make a difference. For some, having a dedicated supervisor or mentor can also be valuable: someone they feel safe turning to when challenges arise, such as sensory overload or a lack of structure. In addition, flexible workspaces, quiet areas and clear communication can have a significant positive impact.
In wider society, it is important to build greater understanding and awareness. The NAR contributes to this through initiatives such as education and awareness activities in schools, municipalities and workplaces. As one autistic person put it: ‘It would be so helpful if you didn’t always have to explain everything.’
4. What does the Netherlands Autism Register (NAR) do?
The NAR aims to develop and share more knowledge about autism, together with people with autism. It does this through long-term scientific research, public education and the development of interventions.
Each year, the NAR collects data on diagnosis, support, education, employment, housing, leisure activities and overall wellbeing among people with autism. These findings are used to improve care, education and support, and to strengthen advocacy efforts. The NAR works closely with the Dutch Association for Autism (NVA) and other organisations to improve the quality of life of people with autism.
5. What makes the NAR approach unique?
Co-creation is a key feature of the NAR approach: research is developed and carried out together with people with autism. The NAR has a panel of autistic people who contribute to research plans and questionnaires. People with autism are also part of the NAR team itself.
Another defining aspect of the NAR approach is its longitudinal study, in which participants are followed over many years. This provides valuable insight into how autism develops over time and supports the creation of more suitable interventions. The NAR also shares results directly with participants through a personalised overview. This allows them to see how their scores compare with those of other anonymous groups within the NAR and gives them greater insight into how autism presents in their own lives.
The combination of science, practice and participation is what makes the NAR distinctive.
6. What are examples of interventions developed by the NAR?
SAM
A smartphone app developed with and for people with autism to monitor and reduce daily stress. The app helps users identify stress factors and provides support in managing stress.
iSleep Autism
An online self-help programme for sleep problems in people with autism, based on cognitive behavioural therapy. The programme has been adapted to the needs of people with autism and supports improvements in sleep quality and mental wellbeing.
Moodbuster Autism
An online self-help programme for depressive symptoms in people with autism. It has been specifically adapted for autistic adults and offers guidance in managing mood-related difficulties.