With over 22 years of history, 550 autistic members, 50-60 self-help groups, a library of German-language literature on autism, a crisis phoneline serving many autistic callers every day, and over 600 participants in their latest hybrid conference, Aspies e.V. is one of the oldest and most solidly established organisations to have joined EUCAP.
Interview by Els Van Beneden
Edited by Maya Parson
Hello Rainer, could you briefly introduce Aspies e.V. to us?
Aspies e.V. is a German autism organisation led by autistic people. It was founded in 2004 and currently has around 550 members. The name of the organisation may now be a little misleading: we focus, of course, on all adults on the autism spectrum, not solely people diagnosed with Asperger’s.
We evolved from the first autistic self-help group in Berlin, which I started in 2000. In 2004 there were not many self-help groups in Germany, and we expanded our activities nationwide. Nowadays there are already 12 groups in Berlin alone and around 50 to 60 across Germany in total. The self-help groups are now organisead locally and can receive advice and support from us if desired.
550 members is no small number. Are they all autistic people?
Not all of them. Ninety percent of our members have a diagnosis or have self-identified as autistic. The remaining ten percent are relatives or professionals. Nowadays we are still strongly represented in Berlin, where forty percent of our members live. But that percentage is declining. Currently we are welcoming about one new member per day.
For members of the Board of Directors, there are six of us at present, we are stricter. There we require a formal autism diagnosis; self-diagnosis is not sufficient to become a board member.
And to what extent are the members active in the organisation?
I estimate that about ten percent of our members occasionally take on a voluntary role. These are often people from the Berlin region. But increasingly we are striving to be more active in other cities. Regionally, members are in closer contact with, for example, service providers and thus have more knowledge of the local support landscape. This is important to us as the list of service providers on our website is the most comprehensive in Germany. We aim to keep it as up-to-date as possible.
You mentioned earlier the list of support services you keep updated on your website. I presume you have other activities as well?
Certainly! We are proud of our online forum, which we run and support. Currently there are about 12,750 users. They discuss a wide variety of topics relevant to them; there is even a section where communication takes place in other languages.
We also have a library. We have a collection of almost every German-language book published on the subject of autism. The library is located here in Berlin, but members can request books by post and only pay the shipping costs.
Another very important activity is our annual conference, Autismustag [Autism Day], which we organise every June in Berlin. This event keeps growing.
How many participants does it attract?
This year, for a venue with 200 seats – brace yourself – we had 600 participants. This means we had to disappoint 400 people. But… we organised the Autismustag in a hybrid format and those who were too late to get a ticket could participate online. For next year, we will probably need to look for an even larger venue.
What does the programme of your conference look like?
We have four or five presentations, all by autistic people and on topics relating to autism. In addition, there is an exhibition area where organisations and projects can introduce themselves.
One thing caught my eye on your website: a crisis helpline.
Indeed, we have one. This is also a project for which we receive separate funding. An autistic psychologist answers the requests received via telephone or email. There are quite a few each day. It is the only helpline in Germany specifically for autism.
There are many links to publications on your website. Is that an important aspect of your work?
Yes, it is. Our main publication is a book in which we have compiled several autobiographical stories of autistic people. In this way, we show many aspects of autism in a single book.
We also have some leaflets and brochures. Other publications are the result of collaborations with other organisations.
Do you often cooperate with other organisations?
We have many different collaborations. You can find a list of our partner organisations and the nature of the cooperation on our website.
With researchers, we cooperate in participatory studies where we advocate for the focus of research to shift to the quality of life of autistic people.
We are also working with other advocacy organisations on a project for suicide prevention.
With organisations such as AutSocial – also a EUCAP member – we have formed partnerships, and we are members of some others.
We are convinced that collaboration is important, not only because organisations can learn much from each other, but also because you can achieve a lot more if you join forces.
Is Autismus Deutschland [Autistic Germany], the traditional parents’ organisation, also involved?
Yes, absolutely. Historically, they focused mainly on children with autism, but now they address all people on the spectrum and their allies. There is very little friction between our organisations. Sometimes there are conflicting interests, but we manage these. More often, we have parallel interests and therefore work together on several projects, which is to our mutual benefit. Just as there are diverse views on autism among their members, so it is within ours. We both work with that diversity.
Can you give an example of such a collaboration with Autismus Deutschland?
Aspies e.V. has a representative in the Parliament for People with Disabilities in Berlin. The resolutions adopted therein are subsequently submitted to the State Parliament. The input from our representative is coordinated with Autismus Deutschland.
There is also a Parliament for People with Disabilities in Bremen. It may well be, though I’m not sure, that things are the other way round there, and that a representative from Autismus Deutschland coordinates with our people in Bremen.
May I conclude that adults with autism enjoy a good quality of life in Germany?
That would be an oversimplification, unfortunately. There is still much more emphasis on children, and less on adults, although the situation is improving. For instance, the demand for diagnosis among adults far exceeds the supply. In the official system, adults must typically wait at least a year before getting a diagnostic assessment. Privately it can be quicker, but much more expensive.
Employment is also not going as well as it should. I estimate that less than half of autistic people have a job. Not because they do not fulfil job requirements, but because they must function in environments not adapted to their needs. That is a regrettable loss of talent. That’s why we also advise organisations that support people in the labour market.
All things considered, I do think it’s fair to say the political climate in Germany is such that inclusion is at least possible. I think this is also true in many European countries, certainly not comparable to the situation in the United States.
What are your future plans?
At the moment, our organisation is experiencing exponential growth. We expect to reach 1,000 members within two years. As I mentioned, our Autismustag also keeps attracting more interest. All this means that soon we will have to look for a larger office and a bigger conference venue.
Above all, we are also looking for more people to support our activities. At present, ninety percent of the work is done by approximately 20 highly dedicated people, but this will no longer suffice. So, we are counting on more active members, giving everyone the opportunity to contribute as they can and wish. We want to focus on each person’s strengths, rather than on weaknesses or deficits, which is not always the case elsewhere. We will also have to employ a few more people, either as staff or on a project basis.
Finally, tell us about your involvement in EUCAP.
We have two people representing us on the EUCAP Board, Silke Rudolph and Imke Heuer. We are very pleased about this. We value our EUCAP membership and are happy to promote it. At a large exhibition here in Germany, we represented both Aspies e.V. and EUCAP, and at our own Autismustag conference there is also a EUCAP exhibition stand. In addition, there is even a flyer about EUCAP in German available on our website.
And is there anything you expect from or would like to see for EUCAP in the future?
Mostly general things. Exchange of project ideas from and to member organisations, for instance. Also, I think it would be good for EUCAP to be financially strengthened. A fundraiser for EUCAP, because fundraising is not easy, would be a good thing.
Thank you, Rainer!
Aspies e.V. at a Glance
Country: Germany (Berlin)
Year of establishment: 2004
Staff: Managing Director, volunteers
Membership: 550
Target group: Autistic adults
Core values: Improving quality of life for autistic adults through self-advocacy and collaboration
Communication: Website, online forum, brochures, Crisis Help Line
Funding: Membership fees, government grants and healthcare funds
PREVIOUS EUCAP MEMBER INTERVIEWS
Autisme Ungdom (Denmark) Thea Enevoldsen
ACM (Malta) Jacob Callus
APVA (Portugal) Raquel Tavares Lebre
PAS (Netherlands) Robert van der Gun
Organiserade Autister (Sweden) Daniel Grahn, Johannes Sandqvist, and Johan Sveno
ASK (Croatia) Kosjenka Petek & Zrinka Sinkovic
suntAutist (Romania) Maria Ivănescu
A-Centrum (Slovakia) Viera Hincová
ARGH (Scotland) Kabie Brook
CEPAMA (Spain) Carmen Molina
CLE (France) Thibault Corneloup & Hélène Queyras
Autisme Digitaal (Netherlands) Frederik Boven Stichting
