The Autism Research Cooperation
The Autism Research Cooperation (AFK – Autismus-Forschungs-Kooperation) is an association of autistic people and autism scientists, mainly from the Humboldt University of Berlin. The aim is to research questions jointly that are relevant for adult autistic people. In the long term, the research results should contribute to improving the quality of life of people on the autism spectrum.
The AFK was founded in 2007 on the initiative of Isabel Dziobek, who is now Professor of Clinical Psychology of Social Interaction at the Humboldt University of Berlin and Principal Investigator in the NeuroCure Cluster of Excellence at Charité – Universitätsmedizin Berlin. At the AFK, autistic and non-autistic people do research together on an equal footing: the people on the autism spectrum decide for themselves, which research questions are worth asking. This is because adults on the autism spectrum have often felt that scientific research efforts did not reflect their interests. Although parents of children with autism have taken a more active role in public and research on autism, an active cooperation between adults with autism and the research community in Germany had not existed until the AFK was founded.
In the AFK, about 30 people with and without autism work together on the planning, conduct, analysis and communication of their research projects. Democratic decision-making processes respect the particular needs of all people involved. All members work voluntarily; the initiative gets support from occasional donations.
Projects of the AFK
The webpage of the AFK gives an overview on the projects.
Since 2007, the first projects have dealt with the knowledge and prejudices about autism in different population groups. Using a newly developed questionnaire, people from the general population and from specific professional groups were surveyed. The results were presented and discussed at scientific conferences. In addition, they were adapted for the respective target groups: a series of information flyers (see Figure 1) communicates the study results and knowledge about autism for job center employees, general practitioners, teachers or psychotherapists. The flyers are designed to improve communication and to reduce prejudices and obstacles.
They are available on the webpage of the AFK.
Recent research of the AFK has investigated the outpatient psychotherapeutic care for people on the autism spectrum. One study compared the experiences and needs of people on the autism spectrum with other groups of people. In addition, psychotherapists were asked about their own level of knowledge and competence in treating people on the autism spectrum, and whether they had any experience in this area. The results of the study were published in a scientific journal (1).
The AFK also offers advice for other research groups who plan to conduct studies with people on the autism spectrum. To this end, the AFK has developed a checklist for autism-friendly research with adult participants in a comparative study.
Research groups that use this checklist can label their call for participation and/or study information with the corresponding label (see Figure 2). This is a way for researchers to show potential participants that they are trying to make their participation in the study as pleasant as possible. A study to develop a checklist for autism-friendly research with children and adolescents is currently being carried out.
In 2016, the AFK received the Anti-Stigma Award of the German Association for Psychiatry, Psychotherapy and Psychosomatics (DGPPN). With this prize, the DGPPN honours projects and initiatives that promote more tolerance and integration.
References
Lipinski, S., Blanke, E. S., Suenkel, U., & Dziobek, I. (2019). Outpatient psychotherapy for adults with high-functioning autism spectrum condition: utilization, treatment satisfaction, and preferred modifications. Journal of autism and developmental disorders, 49(3), 1154-1168. doi: 10.1007/s10803-018-3797-1
Contact
Prof. Dr. Isabel Dziobek
PI Exzellenzcluster NeuroCure
Charité – Universitätsmedizin Berlin
Head of Working Group Clinical Psychology of Social Interaction
Humboldt-Universität zu Berlin
Berlin School of Mind and Brain | Department of Psychology
Email: isabel.dziobek@hu-berlin.de
Telefon: +49 (0)30 2093-6186
Autism-Research-Collaboration
Website: Autismus-Forschungs-Kooperation
EMail: info@autismus-forschungs-kooperation.de