Interview with Matthias Huber

For the past ten years, Matthias Huber has been involved with Worldwide Autism Association (WAA), a small ‘by and for’ type organisation founded in Switzerland by Patrick Frey. WAA has multinational membership, and all its members are on the autistic spectrum. Recently Matthias also became board member at his national autism society. I interviewed Matthias about his experiences and his current academic work.

The idea of self-representation autistic people has come up only recently in the Swiss autism society. Matthias tells about how things started moving:

- I am member of Autism Switzerland, German-speaking part. We have a French-speaking and an Italian-speaking part. Together we all form Autism Switzerland.

- There were some people on the spectrum who complained about only parents and professionals being board members. After some discussions within Autism Switzerland German-speaking part, they decided to take an autism spectrum person "on board".

I asked Matthias about the selection process. He expressed satisfaction with the cautious and thorough preparations taken by the Autism Switzerland board.

-They first invited me because I was recommended by professionals as being always on time, knowing much about autism (personally and as a professional), being active in teaching parents and professionals about autism, and teaching people on the spectrum about the behaviour of the non-autistic population.

-They invited me to some of their meetings, as a visitor for a couple of times. During these meetings they explained everything to me; structure, formalities, and content of discussions. After these visits they asked me if I would be interested in becoming a member, and if so, what would be my personal interest in being one. I got officially elected at a general meeting.

-They did a good job. Explaining every step, asking what would be appropriate for me – regarding things like asking questions, environment...

Matthias has a variety of tasks, tailored to his abilities and limitations. There is plenty to do, as awareness about adult issues is still very limited.

-I am a representative for people on the spectrum. That means I tell board members about their requests, their wishes, their concerns. I do not have a department as the others have, but "special duties and responsibilities".

That means I only do things I am capable of, like helping with renewing older articles about autism, or to writing some parts of new ones. Or helping to find future speakers (professionals, parents, people on the spectrum) to invite to our events. They ask me about my opinion on offering a workshop for people on the spectrum, what ideas I have, or if I could ask others on the spectrum about their wishes. I go to autism relevant events and tell them about it, or I write summaries about the events.

- There are urgent issues in Switzerland, like being aware that autism is a life-long issue. Adults on the spectrum are rarely discussed in media; diagnosticians for adults are not yet taught about the autism spectrum; there are workshops and summer camps for children and teenagers, but not yet for adults. Many adults on the spectrum do not find appropriate education, jobs, or apprenticeships.

Matthias trusts his autism society’s willingness to improve the situation. He believes that much could be gained by international co-operation and networking, but has doubts about his own resources in this respect.

-Autism Switzerland and its German part are interested in hearing from adult-oriented projects from other countries, and they are in contact with Germany for instance.

-Sometimes it is not possible to copy everything, due to cultural, political or social differences, but it is possible to copy some parts and to modify the rest.

-I am convinced that international networking between autistic adults or between organizations is important. Personally I am afraid that it would take too much time being active in networking, but I am still interested.

In 2005 Matthias visited us in Finland, running a workshop about his master’s thesis. He got very positive reactions from the Finnish audience, as a professional dedicated to patient, empathetic hands-on work with children on the spectrum. Currently he is pursuing a doctoral degree.

-My doctoral thesis is about special interests in Autism/Asperger Syndrome: The meaning of special interests. Until today, no research has been conducted on a possible correlation between the stage of psychological development of individuals with Autism/Asperger syndrome and their cognitive, emotional and social expression while engaging in their special interests.

-I would like to show that special interests are more than a clinical symptom. They should be seen as more than just a psychopathological diagnostic result. Special interests are a tremendous resource at home, at school, at work and at therapy sessions.