Putting young people at the centre of autistic advocacy is key to the mission of Autisme Ungdom.
Interview by Els Van Beneden
Edited by Maya Parson
Please tell us about Autisme Ungdom.
Autisme Ungdom is run for and by young autistic people, and it is the only Danish organisation where all board members are themselves autistic.
We want to offer a space where autistic young people can simply be themselves, set their own priorities and have their own voices heard in the public debate in Denmark.
The organisation was founded in 2019 by a group of young people who felt that very little was being done for autistic youth in Denmark. They wanted to create a space where they themselves were at the centre, rather than parents or professionals.
We are explicitly “for and by” autistic people — that is not just a slogan for us but the core of our identity. Our aim is for young autistic people to be seen and heard.
Our members are between 13 and 35 years old…That broad age range is important because many people are only diagnosed later in life and then still have to go through stages that are typically associated with puberty and adolescence. With us, they can catch up on that, in contact with peers and also with younger members. Members learn from each other in both directions: older members share their experience and perspective, while younger members contribute their own insights…At the moment, we have around 1000 members.
How did you become involved?
I am 28 years old and only received my autism diagnosis four years ago. I received hardly any support [previously], and that felt deeply unfair. I felt that something really needed to change. I then went looking for like‑minded people, and that is how I found Autisme Ungdom.
At my first meeting I suddenly found myself in a room with around fifty autistic people, most of them women. That sense of recognition was incredibly strong, and I knew straight away: I want to do more here.
In 2024, I took part in a policy project and during that process I was asked whether I would like to become Chair. In the meantime, I had graduated in Finance and, in April 2025, one year after I first got to know the organisation, I became Chair. Since then, I have put a great deal of energy into further developing Autisme Ungdom, particularly in securing sustainable funding.
What are the main objectives of Autisme Ungdom?
We have three main objectives: firstly, to increase awareness of autism; secondly, to bring the stories and needs of young autistic people onto the political agenda; and thirdly, to create inclusive and safe autistic communities.
We want that whenever someone asks us for information about autism, the answer is grounded in the knowledge and experience of a whole community, rather than coming from a single person.
Could you give some examples of your projects and activities?
We organise a broad mix of activities. There are members’ meetings, local activities through the six regional groups, and an annual summer camp which is a real highlight for many young people.
In addition, we provide consultancy for other organisations, for example for a dance project that wants to become more accessible for autistic people. We support them with our expertise on sensory processing, communication and safety, and we involve young people in thinking about what actually works for them.
A very important element is our Discord server, where more than 800 autistic young people form an online community…Through Discord, we also find young people who would like to share their story in our members’ magazine or in other formats. Unfortunately, it is difficult to find funding for this online community because many funders are not yet convinced that this is a good way to tackle isolation. For many young people, however, online contact is genuinely healing and an important first safe step towards connection, so we continue to advocate strongly for this. There are now also several channels in English on our Discord server, which makes international connections possible.
You invest a lot of time in policy and public visibility. What does that work currently look like?
Very concretely, the evening before this interview I was on national television in a debate about school dropout among young people, where autistic young people are unfortunately heavily over‑represented. Autisme Ungdom will also take part in a working group at the ministry on this issue.
The situation regarding employment is also worrying. Unemployment is highest among autistic people, including those who are highly educated. Research shows that autistic people who drop out of their first job after graduation have only around a 40 percent chance of ever returning to the labour market. That is a frightening figure with a very high social cost. We also want to influence policy in this area.
In the longer term, we hope to do this maybe through the Danish national disability advisory council, but at present that council mainly focuses on physical disabilities. Neurodivergence is hardly embedded there yet.
There is a great deal of work to be done to broaden knowledge and understanding to include all forms of disability.
Symbols such as the sunflower lanyard, which is gradually becoming known on public transport, for example, help to make invisible disabilities visible. These are precisely the kinds of developments we like to encourage.
How do you finance your work?
A small part of our budget comes from membership fees, but that is obviously far from enough. We receive support from DUF, the Danish Youth Council, which funds youth organisations. In addition, we actively look for other funds, but that is difficult and often project‑based.
Project funding means that we constantly have to write applications, which comes with a lot of uncertainty. At the same time, we actually need stability in order to protect autistic staff and volunteers from constant stress. Writing all these applications costs an enormous amount of time, time that we would much rather invest in substantive work with young people.
Fortunately, in December, we officially started working with the Obelske FamilieFond. Their financial support has helped us elevate the work we do.
For me, one of my core missions as chair is that people should be paid for their advocacy work. Working in an inclusive way – truly inclusive – costs money, and we need to be able to say that openly.
What other challenges do you face besides funding?
Many of our activities depend on volunteers, and that is not always self-evident. Volunteers’ capacity fluctuates, especially when you work with a large group of neurodivergent people, and we have to respect that.
We therefore work closely with other organisations, but we are not yet large enough to provide structural support to all local initiatives. We would very much like to set up more local groups and also fund and facilitate them from the national level, while at the same time remaining a partner for existing initiatives, such as the Autism House in Copenhagen.
Do you collaborate with other organisations nationally or internationally?
Nationally, we do not currently run joint projects with other autism organisations, but our relationships with them are good. When the Danish umbrella organisation, which originally started as a parents’ organisation but now works more broadly for all autistic people and those around them, does something with or for autistic young people, we are routinely involved or consulted. This means we can engage with them on a professional footing, even when we do not entirely agree.
Internationally, we would like to collaborate more on topics such as autistic participation in research and good practice around online communities. One example is our wish to build an active online D&D group for autistic young people, but that also requires facilitation, infrastructure and therefore resources.
What inspires you most to do this work?
Inspiration is very important to me personally. I mainly find it in others, particularly other neurodivergent women. Ellie Middleton from the United Kingdom, for example, who has already written two books, and is the person behind NeuroClub. I have given Devon Price’s book Unmasking Autism as a present at least five times.
I also find the Danish anthropologist Christian Groes inspiring because he shows that neurodiversity has existed in different cultures and eras. His work helps move the conversation about autism away from narrow medical models and shows that we have always been part of humanity.
My own diagnosis four years ago felt like opening a positive Pandora’s box. A lot came at me, but above all it brought the chance to get to know myself better and to channel my energy into this meaningful organisation.
Where would you like Autisme Ungdom to be in the coming years?
We are really excited about the future. We want autistic voices to be heard much more directly in academic research, by involving autistic people in that work and by supporting more autistic academics. We also want to further strengthen our online community…But again, we run up against the need for structural funding, because you cannot simply run such a group “on the side.” You need facilitation, infrastructure and time — in other words, money.
The same applies to arts and culture projects, which we know can be very powerful in bringing people together. We are making progress step by step, but it remains a long‑term effort.
Finally, do you have a message for other EUCAP Members?
Yes, absolutely. If you want to advocate for the interests of a minority group, talk to those people themselves. Involve them at every level of your organisation: on the Board, in working groups, in projects. People want to be involved when it concerns their own lives.
Also, be autism‑friendly towards yourself and towards the people in your organisation. That is just as true for EUCAP as it is for national organisations. Create structures that can genuinely support neurodivergent people.
And, very importantly: being inclusive costs money. If we want organisations like ours to continue to exist sustainably and to grow, we need stable funding to give autistic people not only a voice, but also real power and resources.
Thank you, Thea!
Autisme Ungdom At a glance
Name: Autisme Ungdom
Country: Denmark
Year established: 2019
Staff/Membership: Board, paid staff, volunteers
Target group: Autistic young people
Core values: Autistic awareness, inclusivity, safety
Communication: LinkedIn, Instagram, website
Funding: Membership fees, government youth funding, grants
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suntAutist (Romania) Maria Ivănescu
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ARGH (Scotland) Kabie Brook
CEPAMA (Spain) Carmen Molina
CLE (France) Thibault Corneloup & Hélène Queyras
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