(by Els Van Beneden)
Introduction
In this interview we talk to Frederik Boven, the chair of Stichting Autisme Digitaal, one of our member organisations in the Netherlands. Frederik tells us about the history of Autisme Digitaal’s origin and development, its plans and greatest challenges. He also shares his expectations of EUCAP and future collaboration opportunities.
Frederik, how did Autisme Digitaal get started?
Frederik: In 2016, we started the website ‘Autismevriendelijk Nederland’, because there was hardly any online information available for adults with autism. For us, it was a way to contribute to society on a voluntary basis. The site quickly became a success, which created the need to establish a formal organisation. In 2017, Stichting Autisme Digitaal was officially founded.
How is the foundation organised and what does its structure look like?
Frederik: The foundation runs entirely on about 50 autistic volunteers. Unlike an association, a foundation in the Netherlands is not a membership organisation, but a non-profit working organisation. The board consists of seven people: besides me as chair, there is a vice-chair, treasurer, secretary, strategic policy coordinator, volunteer coordinator, and a legal expert. In addition, there are seven coordinators who manage various activities. Some work in teams, for example for webinars and social media, others independently, such as for the newsletter.
What are your objectives?
Frederik: We have two main goals. First, we want to share information about autism in adults, always from an autistic perspective. Our target group consists of autistic adults, but parents, caregivers, and other interested parties are also very welcome. Second, we offer online volunteer work to people with autism. For many, it is difficult to find suitable work; many volunteers are unfit for work or struggle with burnout or its aftermath. Only a minority have paid jobs. Volunteering requires flexibility: sometimes people drop out temporarily and tasks need to be taken over, especially if several people are absent at the same time.
What activities do you organise?
Frederik: All our activities are entirely online. In the past, we sometimes held meetings on location, but since the pandemic we work exclusively digitally-and that works excellently.
We have three main activities:
- Once or twice a month we organise a webinar on various themes concerning autism in adults.
- Our website features an active blog: every week a new article is published, written by one of our contributors. In addition, we offer an extensive database of freely accessible articles.
- Finally, there are the ‘Explore Your Autism’ groups: online discussion groups for people with a recent diagnosis, focused on information and peer support.
That’s quite a range. How do you keep it running?
Frederik: It takes a lot of effort: from the speakers at the webinars, the bloggers, the facilitators of the discussion groups, and of course the coordinators. They handle planning, facilitate volunteers, provide support, and organise training sessions.
What are you most proud of?
Frederik: Perhaps our diversity. About half of our volunteers are women. We have bloggers who are part of the LGBTQ+ community and/or have a migration background. That diversity is reflected in our activities: we look at every topic from different perspectives.
Do you collaborate with other autism organisations?
Frederik: We have no formal partnerships, but we do have good contact with other autism organisations in the Netherlands, such as Stichting Autminds and Iets Drinken, which are also autistic-led organisations. We also have a good relationship with the Dutch Association for Autism, for example.
Are you active in policy or advocacy?
Frederik: No, we limit ourselves to our core tasks. Other organisations in the Netherlands focus on policy influence and advocacy.
How does Autisme Digitaal communicate with the general public?
Frederik: We attract many visitors to our website. We also regularly send out a newsletter to more than 2,000 people-and that number is steadily growing. Additionally, we are active on social media. Occasionally, we receive media attention, for example when launching our new website or starting our blog.
How do you finance the foundation?
Frederik: Participants in our webinars pay a contribution, which covers our costs. In the past, we also received project grants, but that involved a lot of administrative work and pressure. Grants are often intended for new projects that must be realized within a certain period.
Do you measure the impact of your activities?
Frederik: We analyse our data: who participates in which activity? After each activity, we ask participants to fill in a short survey. This gives us insight into our reach and allows us to better tailor our offerings to the public. We also learn who we are not reaching sufficiently.
What is your biggest challenge?
Frederik: How we can reach even more people with autism and their environment in the Dutch-speaking region, despite the abundance of information channels.
What are your plans for the future?
Frederik: You’re just a bit too early with that question! At the moment, we are working on our strategic policy for the coming years. Stay tuned!
What does membership in EUCAP mean for you?
Frederik: We find it important to be affiliated with EUCAP as an autistic-led organisation. The role of EUCAP at the European level is very important to us, and through our membership we support and endorse that.
Finally, is there anything you would like to share with other EUCAP members?
Frederik: Yes, a thought: in the Netherlands, we have the Dutch Autism Register (NAR), where a lot of data about Dutch people with autism is collected through annual surveys. I’m curious if other countries have similar data and whether it’s time for a European Autism Register.
Learn more about Autisme Digitaal on their website:
In Dutch: https://www.autismedigitaal.nl/
In English: https://www.autismedigitaal.nl/english/
