Since 2008, Organiserade Autister has grown from an informal grassroots project to a national-level organisation with ten chapters across Sweden. In this interview, Chairman Daniel Grahn, founder Johannes Sandqvist, and Vice-President Johan Sveno highlight Autister’s experiences building autistic community and the importance of putting autistic strengths—and autistic people—at the forefront.
Interview material collected and edited by Maya Parson
What are the core values and objectives of your organization?
Neurodiversity. We champion the idea that being autistic is not a disability in the commonly understood sense, and that treating it as such has the potential to do more harm than good, while allowing our autistic strengths to go to waste.
We can and should be an asset, not be made into a burden needlessly and artificially.
Autistic community is best built by autistics. Many of us have seen the result of non-autistics trying to provide space and support, and the results can be generously described as a mixed bag. We all face our own challenges, but between us we are much more likely to find others facing similar challenges, and sharing experience between us is a valuable source for workable approaches not available from non-autistics.
What was the motivation for founding your organization?
Dissatisfaction with the existing networks of support, in particular how they presented and often continue to present the autistic mind only as a burden and a limitation in need of help and support, while treating autistic strengths as a curiosity and a footnote. These networks are typically dominated by non-autistic relatives of autists, and the lack of an inside view deeply colours the structure of the support on offer.
What are your main activities and projects?
We organize lectures given by autistics across a broad spectrum of topics, both directly related to autism and not. Our lecturers are paid for their work, and we vet their content to reflect our values.
We organize a recurring roster of wide-ranging Zoom activities hosted by trusted volunteers. Anything from Creative Writing sessions to Arts and Crafts to single-sex discussion rooms for sensitive topics.
We have local chapters in places where our membership base is particularly strong. They organize outings such as bowling nights or restaurant visits all in the name of building local autistic community, as well as fighting involuntary loneliness.
What specific achievements or impacts are you most proud of?
We are rather proud of our long-established collaboration with KIND, the Center of Neurodevelopmental Disorders at Karolinska Institutet. While we take some issue with the vernacular, being able to provide a direct link between autistics and serious research done by a venerated institution such as KI has been invaluable for both parties involved.
We are also proud of having grown from an informal, unfunded grassroots network of autistics into a national organization with international collaboration efforts and as mentioned, serious research attention as recognition of our legitimacy.
How does participation in EUCAP contribute to your mission?
In two words: reach and information. We stay up to date on the current comings and goings that touch on the autistic experience. It provides us with inspiration and ideas, and it lets us participate in the international community on equal footing.
What difficulties or challenges does your organization face?
We are proud of having managed to build a functional democratic organization built by, built for, and not least built from individuals with what might be termed strong opinions and colourful personalities. We have managed to continue herding cats for 15 years and counting.
Despite being the only organization with our specific profile, larger and more prominent organizations presenting themselves as supporting and advancing autistic voices have had much easier access to government funding. We first received government support two years ago, after having existed for 16 years.
How is your organization funded?
Membership fees and donations have been our bread and butter up until recent years.
We now apply yearly for government funds, one for awareness-raising, and one aimed specifically at fighting involuntary loneliness.
What are your main goals for the coming years? Are there new initiatives in development?
There are. We recently acquired an additional physical locale in Ludvika which will be refurbished and used to host our activities there. The locales in Örnskjöldsvik have been expanded and will see upgrading shortly. We have been looking into the acquisition of an additional locale in Gävle
We will continue our work towards launching an Arvsfondsprojekt, aimed at bringing attention to damage and injury to autistics, caused by current approaches in care and support institutions.
We have multiple people in line for potential employment should we receive the funding to do so, and hopefully our organization will continue to grow accordingly.
Thank you, Daniel, Johannes, and Johan!
Organiserade Autister at a glance
Name: Organiserade Autister
Country: Sweden
Year established: Informal network began 2006, formalized in 2008.
Staff: 2 (1 paid, 1 volunteer), governing Board of 7 elected members
Membership: 300 members
Target group: Autistic adults
Core Values: Autistic community, valuing autistic strengths
Communication: Website, social media channels, blog, online forums
Funding: Membership fees, donations, government grants
Previous EUCAP Member Interviews
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
