Centring Autistic Knowledge: An Interview with PAS (Netherlands) 

Launched in 2001, PAS (Personen uit het Autisme Spectrum/Persons on the Autism Spectrum) is one of the longest-standing autistic-led organisations in the world. Robert van der Gun, member of PAS, shares how the organisation places the knowledge and perspectives of autistic people at the centre of their work.

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Interview by Els Van Beneden 
Edited by Maya Parson

What are PAS’s main objectives?

We have three main objectives: meeting, sharing knowledge, and advising.

We organise contact days for autistic adults. These are held very regularly in different parts of the Netherlands…These gatherings are both for those seeking contact with peers or like-minded people and for autistic adults who simply want social contact and a pleasant day out.

These are peer contact days intended for adults (18+) with average or higher intellectual abilities who have an autism spectrum disorder. We expect participants to be capable of attending independently. There is one exception: people may bring their partner, even if the partner is not autistic. But support workers, friends, acquaintances, or family members without autism are not welcome unless given explicit permission. 

At present, [we do this] in around 15 cities, though it depends on where volunteers are available to organise them. There are still regions without any contact days, so we are constantly on the lookout for volunteer hosts.

And your second objective, knowledge-sharing? 

For this, we organise discussion groups. Autistic adults can share their experiences with other autistic people within these groups, which are led by a volunteer facilitator. There are groups specifically for men and women, as well as mixed groups. Groups have a maximum of 10 members. At the moment, there is a men’s group and a women’s group in Amersfoort, as well as mixed groups in six other cities.

And your third objective, advising?

This involves giving advice based on our lived experience. 

PAS strives to ensure that such knowledge reflects our own insights: modern, nuanced, up-to-date, and non-medicalised. This means we participate actively but sometimes also act as a critical voice.

Could you give some examples?

Certainly. We actively share our knowledge in a range of projects. For instance, we are involved in the Autism Information Tables. This is an ongoing national project in which various organisations work together on autism-related issues, supported by the government.

Each Autism Information Table focuses on a particular theme. In 2022, the project produced the brochure “An autism diagnosis… and then?”  aimed at adults going through a diagnostic process. The brochure has been widely distributed and is used by mental health institutions supporting people in such trajectories. At present, the Autism Information Table is working on the theme of sexuality. In a Flemish-Dutch collaboration led by the Information Table, web texts have been developed and published both on autisme.nl  and participate-autisme.be. 

In addition to these activities, we also took part in the Academic Collaborative Centre for Autism (AWA). The AWA was set up on the recommendation of the Dutch Health Council to ensure better transfer of scientific knowledge into practice. It is a collaboration between several organisations and produces concrete outputs that can be applied in policy, healthcare, and education. PAS served on the steering committee and was represented in all project groups. Several PAS members contributed in different roles to AWA outcomes. Topics discussed over the years included: coping with your own autism; support, treatment, and medication; education; representation and inclusion. 

We are also members of the Expert Advisory Board of NIPA — the Network for Innovation & Product Development Autism. NIPA is a national network of autistic professionals and professionals working in mental health organisations. NIPA develops knowledge resources for the support and treatment of autistic people. PAS, both as project group member and chair of the Expert Advisory Board, had a leading role in the development of updated psychoeducation for autistic adults. 

Finally, we were also participants in the Autism Research Agenda (Onderzoeksagenda Autisme – OZA). This initiative collected input on what research topics should be prioritised, according to autistic people and their families. Traditionally, scientists, professionals, and funders set the autism research agenda. The initiator of OZA, Karin van den Bosch (Karins Consultancy), wanted research to focus more directly on the questions and needs of autistic people themselves. Together with Diederik Weve, she set up the project. 

That is quite a lot. How is all of this financed?

All of our members contribute on a voluntary basis. We usually hold our contact days and discussion groups in venues provided to us, which keeps costs quite low. Our remaining expenses are covered by membership fees. PAS members pay €24 a year by direct debit, or €28 a year without direct debit.

Does PAS have specific plans for the future?

We want to continue on the same path, steadily expanding our activities to reach more people in more places. At the moment, we are also in the process of updating our website.

What is your relationship with EUCAP?

Although we’re not deeply active within EUCAP, we place great value on our membership and were there from the very beginning. We sometimes regret that there is such a strong focus on science and disability. This seems to be driven largely by the fact that governments allocate funding based on the idea of ‘disability’. 

The general public still knows far too little about the fact that autism is not necessarily a disability.

Is there anything else you would like to share with the other EUCAP members?

Yes. Try not to focus too much on autism as a disability. It reinforces stigma, it means we are not taken seriously, and it perpetuates the idea that we are outside society.

Thank you, Robert! 

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Previous EUCAP Member Interviews

Daniel Grahn, Johannes Sandqvist, and Johan Sveno – Organiserade Autister Sweden Kosjenka Petek & Zrinka Sinkovic — ASK Croatia
Maria Ivănescu — suntAutist Romania
Viera Hincová – A-Centrum Slovakia 
Kabie Brook – ARGH Scotland
Carmen Molina – CEPAMA Spain
Thibault Corneloup & Hélène Queyras — CLE France
Frederik Boven Stichting — Autisme Digitaal Netherlands